One Step Forward, Two Steps Back

Have you ever had that dream where you're rushing to get to class so you won't be late for the final exam, but you're terrified because you realize that not only haven't you studied for the test but you've never attended a single lecture? I have that dream all the time. I never remember what the class is about, but I'm always late for the test and not even slightly prepared to answer anything beyond my name. 

I've had different versions of this dream several times in my life, but I seem to have it more often now as a mother. It's pretty straightforward in terms of deciphering it - I feel like I'm living a life that I'm ill-equipped to handle. Bottom line - I don't feel like I'm the right mom for the job.

I'm guessing just about every parent has those feelings once or twice, but as a special needs parent, it just feels like I'm constantly being expected to know the answers to something that I've never studied for - and I feel like I'm failing the test. The thing is, this isn't like some college course where if you fail the semester you can just take it over again - this is my son's life, and I'm failing him. 

I don't really mean to sound so dour, but at those times when he's screaming and kicking and fighting and crying - it's so hard not to feel like our lives are constantly one step forward, two steps back. For every time that I think I'm getting through and he's understanding me, there are a dozen times where I'm standing pulling my hair out trying to figure out why he suddenly thinks the world is ending. I don't know the answers. I make guesses as to how to help him, and even when I might get something right now and then, the answers will then change...two steps back.

It sucks. I suck at it. And still don't think I'm the right person for the job, and yet here I am. 

The thing about my dream? It never crosses my mind NOT to go and take the exam. I always go. 

So, maybe that makes me the right mom after all...somebody has to make sure the fans keep spinning...even if they are going backwards, at least they're still moving.

Jealousy

It's been talked about numerous times by numerous people - the jealousy that parents of special needs children can sometimes feel towards parents of neurotypical children. Jealous of their seemingly normal lives. Jealous of the things they often take for granted...their kid can have full-on conversations at the age of two? Good for them...my kid still can't tell you his name when asked directly. Their kid was potty trained at 18 months? Wow - so great...my kid is almost 5 and is still in pull-ups. Their 3 year old is playing soccer/hockey/golf? Fantastic...my kid trips over himself all day long. Jealous.

But, lately, for me, my biggest bout of jealousy is towards the other special needs moms who have a spouse to go through all this with them. Someone who knows exactly what they're feeling day in and day out and can be there to give them a break when they need it. Someone who can be their shoulder to cry on, give them a hand to hold, listen to them vent and scream and lift them up when they can't seem to take another step.

I follow a lot of other blogs of autism moms (and a couple dads), and somehow all but one of the blogs is of someone who is part of a unit. Their stories are of how they've endured together. How they work as a team and get each other through different situations. Their pictures show their spouse helping their child, loving their child, caring for their child...and I'm jealous.

I want that. I need that. My son needs that. I need someone who understands what it's like day in and day out. Someone who knows what it's like at 11 at night and it's been 3 hours of "Go to sleep!!" to no avail. Someone who can see when I just can't handle 5 more minutes and I need a break to be able to recharge and be the mom I want to be for my son. TheKid needs someone who will give of himself when I'm too empty and have nothing left to give. Someone who will be my partner, my teammate and will help to make my son a better person because of our love for him.

But, I'm a single mom. It's not what I had planned for myself, but here I am. I do have great support from family, but it's really not the same. And I'm jealous. Mostly because I think my son is the one missing out on what he deserves. He deserves more than what I can give him from my exhausted supply...

Although I feel I've accepted the reality that is my life, I'm still prone to jealousy.

When life gets you down

Life is stressful...

Everyday life. Not just autism and all its crap, but just life. Everyone has their own issues - work, relationships, bills, etc., etc. - and it can be stressful. And sometimes it just sucks...or, maybe that's just me.

Life had me down recently. There had been a few long, stressful work weeks, and although I thought I made it through the weeks well, the stress caught up with me. I was just wiped. Exhausted, but couldn't sleep. Restless, but didn't want to do anything. It just basically sucked, and I felt drained. (Not quite full-fledged depression, but close.)

The worst part is, it's when I get in these moods that the autism anxieties creep up on me the most. The stuff I try not to dwell on. The frustrations. The fears. The anger towards autism and all its crap...but mostly, the feeling of failure.

Am I doing enough to help The Kid? Am I pushing too much? Am I not pushing enough? Am I involved enough? Am I working too much and not spending enough time with him? Should I be trying different therapies? Should I be trying different diets? Should I be looking at different schools? Different care givers? Different therapists? Different doctors?

I could go on, and on, and on...and the thing is, these doubts and fears don't really go away when I finally get out of my "funk"...they're always there. It is certainly easier to be proactive about them when I'm not drained from the rest of life's stresses, but it's still hard.

What I try to remember is that it's okay to have those fears. It's okay to have those doubts. It's okay to ask question after question after question...sometimes, I have to remember to give myself time to feel the fear/anxiety of failure, because that is what motivates me to deal with the hard questions.

I will likely never be able to answer any of those questions. They will always be there. If they aren't always in the back of my mind, then that's when I actually will become a failure to my son.

Gotta keep things spinning...

See how they grow

So, I posted a few days ago about my fears of The Kid starting school and all that entails, and I haven't really stopped thinking about it. Actually, I don't have time to stop thinking about it, because even though I'm planning to keep him in preschool one more year, that year will fly by before I know it and I have some big decisions to make.

But, before I get caught up in that tangent again, that's not really what I want to get out of my spinning fan tonight...

I am part of an email list for autism this and autism that - university research projects, seminars, training, support groups, fund raisers, etc, etc - and one email that came through today contained a couple videos regarding transitioning to adulthood with ASD. So, I started watching one...I think I made it about 30 seconds and I couldn't watch anymore. It wasn't a bad video - a young man starting at a community college, and an interview with him and his father - but I wasn't ready to envision that yet. That's not just a scary road - it's an unknown road.

I know it's been said many times, and re-quoted over and over, but it's true that when you've met one person with autism, then you've met one person with autism. The Kid isn't just another person with autism, he's The Kid and his autism is uniquely his. His road will be unique to him. His trials and his successes will be unique to him. And his future is not set.

Now, I do believe in being prepared and learning from others who have traveled the autism road before us, but I think it can be difficult to look too far down that road because of all the potential curves and detours that road can reveal for each individual. If I let myself get caught up in worrying about college or adulthood, etc., then I risk letting my energy get lost down the worry roads of "what if?", and that does a disservice to The Kid today.

He needs me to focus my energy on today. Tomorrow. Our issues now. Issues I can focus on dealing with now. Issues I can help him to work through now. He's 4, and I need to deal with autism and how it affects my 4 year old. I need to be watching videos on potty training and therapies. Read articles on speech therapy, occupational therapy and different school options. I have to be in the present and try not to worry (too much) about the future.

We're not ready to worry about that road, so no use spinning our fans down that one when I already have too many things stuck in my fan for today.

Enlightenment

Somehow, I stumbled upon a new autism blog last night that has brought me new enlightenment and completely thrilled my soul. If you haven't read Mom-NOS, you are missing out. Her post, "a hairdryer kid in a toaster-brained world" had me sobbing last night...not in a 'this is such a sad story' way, but more of a 'hallelujah, someone gets it and has put it in the most eloquent words possible!!' Okay, so maybe hair dryers and toasters don't seem eloquent, but once you read it you'll understand. And I want to be like Mom-NOS for The Kid. I hope, someday, I will.

New year, new number...1 in ??

Okay, so it's been a while since I've posted because, quite frankly, life is busy as hell and I've pretty much forgotten all about this. But today, I commented on someone else's blog and remembered "hey, I blogged once!", so I clicked on my own name and re-read my last post. Actually, it's the first time I've read my post since I wrote it...not too bad if I say so myself, but it's already out of date! I mean, 1 in 88? Now it's what? 1 in 50? It doesn't really matter what the actual numbers are, what matters is that our world/society is still not ready for them.

1 in 50 means that of all the 4 year olds in The Kid's school, he is that 1 in 50. Except, he's not the only 1 - there is another boy in his class who is also that 1 in 50. And there aren't 50 4 year olds.

Now, I know this isn't the least bit surprising to most people. It's not surprising to me. The "1 in 50" doesn't surprise me. When the new 'numbers' came out, I had more of the attitude of "well, duh."

No, what worries me isn't the numbers, but rather the realization that our society isn't equipped to handle the ramifications of that number. And right now, the biggest issue for me is how schools are not equipped to handle my son or any of the other 1 in 50 kids out there.

I'm terrified of school for my son. Not that he's having a bad time now - he's not. And he loves it. I've been relatively happy with his school and his teachers and the whole bit. But he's in preschool. And it's small. And it's church based. And he's 4. (That's not to say bullying doesn't happen at 4, it does - but that's a different story.)

I'm actually holding The Kid back another year before he goes to kindergarten because he will only turn 5 over the summer, and he's not really ready for that yet. So he'll have one more year in his current school, and I'm very glad for that, but next year will be here too fast and I'm not ready for that.

I'm not ready for the bigger school. I'm not ready for the bigger kids. I'm not ready for the constant worry...are the other kids bullying him? Are the teachers bullying him? Is he speaking while he's there? Is he scared? Is he safe? Is he eating? Is he anxious? Is he happy?

Of course, I know these worries aren't specific to his special needs - these worries could apply to any parent of any kid. But my kid can't tell me if anything happens. This is terrifying for me. The Kid does speak, but he's still considered non-verbal because he doesn't have what's considered natural language. Basically, he has no conversational language. He has a very big vocabulary because he never forgets a thing and so when you tell him "that's a white dogwood tree", he remembers it and can identify any white dogwood tree he sees. But, that's because he's been given the information and the words. And, it's a concrete subject. A tree is an object. It's not a feeling. It's not a thought. It's not abstract. And that's where he struggles.

He's not going to be able to tell me when someone says something to make him sad. He's not going to be able to tell me that he's anxious. Or lonely. Or afraid. Right now, he can't even tell me what he actually did each day in school, let alone how he feels.

But even all of that isn't my biggest fear. My biggest fear is that the only thing the schools are preparing my son for is to learn how to sit still. That seems to be the only goal for special needs kids - sit still and pay attention. Now, don't get me wrong, I'm not saying paying attention is a bad thing and neither is sitting still. It's just that I know The Kid is very smart, and just because he may not be able to sit still or he may look like he's not paying attention, it doesn't mean he isn't learning or that he isn't intelligent. He has made huge strides this past year and amazes me every day with how much he knows. He may not be able to verbalize what he's thinking all the time, but he's a sponge and is constantly soaking up information and he loves learning!

My biggest fear is that the teachers and the school system are going to overlook my son because he's 1 in 50. They're going to overlook him because our school systems are set up to teach in one way. They're not equipped to be able to teach to kids who may learn differently. They're not equipped to be able to recognize that intelligence doesn't always look the same in every kid. And I'm scared.

I know there are lots of schools out there that are working on getting equipped. I know there are lots of schools out there that do use different approaches for different kids. I know those places exist. But for us, in our little town, they don't. And I don't have the means to pick up and move us someplace else. I do have hope in one small private school here in our little town, but they don't have the services to be able to accept my son...at least, not yet. I'm still working on them. I'm still hopeful.