Suck it up.

Well, the pity party is over. Grief comes in waves and right now things are pretty status quo. It's not that I'm enjoying having autism in my life. And I'm certainly not enjoying the tantrums, the therapy appts all over the metropolis, the seemingly-endless advocacy. But today, maybe just today, life is ok.

Sometimes I wonder if it's my attitude that is really the problem. After all, attitude is everything, attitude is the minds paintbrush, [insert your own cliche attitude quote right here]. I try to be optimistic. But it's difficult when you are faced with a situation where it is a given that the end will not be good. Or the end will not be what I wanted. And it's also difficult to feel positive when I witness such ugliness and discrimination toward my child with autism. If you want to get a sense of what I'm talking about, just bring my child to a mall, playground, or out to eat- you will be turning heads, receiving glares, and hearing parents whisper to their child "I am sooo glad you don't act like that."

On the flip side, maybe autism really does suck and it's not my attitude. Most parents I know with an autistic child, especially a child who tends toward the severe end, are hard pressed to find blessings in this mess of smeared poo. I'm not saying there are none, but just that there are extremely few. I often wonder if it's the autism that makes us jaded or what. In between the medical appts, the head-splitting tantrums, getting kicked punched and bitten, the paperwork, being pissed at the school for being shitty, the judgment from "the public", the worrying about the future... there is little time for thoughts of sunshine and rainbows and puppies.

But today I am just here. Everything is settled and calm. I just need an outsider to look in and tell me if I've changed or if things are truly better. This is the normal. Perhaps acceptance isn't too far away.

School is almost here. Kindergarten.

I got caught up in life recently. And the truth is, I didn't know what to blog about again.

Ben is going to start Kindergarten in a couple weeks. It's big and it's no big deal, at the same time. I generally try not to over-think things like this. But it's certainly not lost on me that every other 5 year old that I know is gearing up to go to our neighborhood school.

Literally, the school is in our neighborhood- the neighborhood that on that fateful day in Dec 2004 I brought a tiny 7lb perfectly healthy newborn home from the hospital. Then we did the playgroups and picnics and the birthday parties. We even tried the preschool that Ben's older sister and brother attended. I don't have to tell you how that ended, but I will share that it was a painful few years watching those babies and toddlers fly by him. And then watching kids years his junior pass him.

I'd like to say I'm over it, but of course, I'm no where near over it. The pain doesn't really diminish, it just changes. Now it is hard to even imagine how things should have been- what it would feel like if Ben were going to that school and we were sitting by the mailbox to find out who his teacher will be and how many classmates we know. And he'd be talking. And I'd still be talking to those other parents about all-things-kindergarten. Hard to envision because that is so far from the reality? Anyway, thinking about the should-have-beens is not all that productive.

So I will vow to live in the present as best as I can. I like the school that he will be attending. I am looking forward to a good experience and positive changes that I see happening with this transition. I will drop off my "big kids" at the neighborhood school and I will focus on them and their teachers and classmates. But I will not be stealing a glance down the kindergarten hall. And no, I don't want to hear how upset you are about how your kid didn't win the teacher lottery or didn't get to be classmates with his best friend. Think about it.

Autism: God, seriously WTF?

I swear to you that if one more person tells me that God gave me an autistic child for a reason, I will go batshit crazy. That makes absolutely no sense to me. I'm not going to get philosophical about it, but suffice to say (I believe) not everything has to have a reason or higher purpose. I consider my religiosity to be in the moderate to severe range. ;) I live a prayerful life, I try to act in a Christian manner, I was born and raised and still am a practicing Catholic. So how does it all fit? I really don't know. Whole books have been written on the topic of God and Autism. Not that I've read them, and I probably won't get around to it. (By the way, does it scare anyone else that there is a whole bookcase devoted to Autism books in Borders?)

I have asked the question "why?" many times but usually it's because I really want the answer so I can help Ben get better. Very rarely have I entertained the "why me? why ben? why us?" questions. I don't feel that I need an answer to that. But I still am reserving my right to pity parties.

What does it take to get a little respect? Where respect equals alarm.

Here is a comment I posted on a story about young boy with autism who was not able to access necessary and life-saving treatment for his medical condition. Disgusting. What if this was a kid with cancer that was sitting in that chair waiting for his treatment for over a week?

Here’s a big question: Is this what it takes? What does it take for people to start panicking? Autism is a national health emergency. This kid had public insurance, health care reform won’t stop this from happening. This is about autism and how in 15 years there won’t be anywhere for our kids to go. The federal and state governments cannot handle supporting the ever increasing numbers of people with autism. Scientists and doctors continue to feign exasperation while doing million dollar eye gaze studies, meanwhile our numbers are exploding out of control. I will say again what I’ve said many times before- I support research into causes, prevention, treatment, and potentially a cure for this devastating medical disease that literally stole my son’s life away. Don’t misunderstand, I will continue to advocate for services and supports- my child will certainly need those forever. But only focusing on supports and services is like attempting to stop up the new orleans levees with bubble gum.

Autism organizations need to get real, get out there and start flipping out about these numbers. ASNC hasn’t even changed its website to reflect the latest numbers. We should be out there shouting it from the rooftops. We should bring our kids. We should tell people- autism is not a psychiatric condition- it is a multi-system illness that deserves dedicated wings of hospitals to treat. True autism insurance reform is meaningless unless we can have treatments that help our kids get better. (Though I’m disgusted daily that my husband works for UNC hospitals and the insurance they provide does not cover evidence-based treatments for my son’s medical condition.)

No, I refuse to support more tax increases. I did that last year and they paraded our kids around saying “we need to help poor people with disabilities blah blah blah” and then they slammed our community with the biggest hit. Until these legislators can show some more fiscal responsibility to fund things that matter, then I will not support me paying more when people with disabilities get less.

This ain't Holland.

I had to subtitle the blog this. If you've ever had a special needs child, you know what I'm talking about. This dreaded poem. Don't ever send me this poem and tell me that having a child with autism is "just different".
Ben was diagnosed when he was 23 months old- it was scary, for sure, but I thought we could just get the recommended therapies and all would be well. Four months later, it all hit me like a two ton pile of bricks. Previously his main symptom was developmental delays- things that he did not do- no talking, no pointing, little joint attention. But when the stimming and hand flapping started, I lost it. I brought him to the doctor sobbing asking for help. (To be fair, it was not his regular doc that we saw that day, so to her I'm just a hysterical mother.) She was sweet and kind but she said that having a child with special needs is "just different" and that I needed to look at the bright side- he was healthy. And maybe I should think about taking some meds (for myself!) She ended the visit with saying that there is a poem about raising a special needs child. I already knew about this poem because I have a degree in psychology and had previously worked with families- heck I probably handed it out to some poor unsuspecting mom. I went home that day to google the poem and read it again. The optimist in me felt so much better. I could do different!
Three years later, I'm pretty sure this is nothing like Holland. I still have a good outlook on life. I'm still an optimist. I still believe people are generally good. I still have lots of hope for the future. I still believe my son is awesome in many ways. I adore his quirks and his smile and I love him to the depths of the ocean and up to the moon just the same as I do my other two children. But mothering a child with autism is 5 billion times harder than raising a child with no autism. It is not just different, it is really really hard.

My favorite poem

“Hope” is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird—
That kept so many warm—

I’ve heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.

Starting up.

I have always wanted to start blogging about some of my experiences, particularly with raising my son with autism. I like to write but I never know quite where to start. I think it is that perfectionist in me staring a blank page and thinking about how to make it just so. Then I tuck it away for another time because there is nothing to say and everything to say. Also, I have looked back at previous journals I have written and have felt ashamed. Was I truly that ignorant? The worst part was that I thought I knew everything. I had all the answers. But I know that is a part of the process of life and developmentally typical for a 20-something. At least now I realize that I am constantly growing. These are just my opinions. The opinions of a 34 year old mom who has a lot to learn. Shared with whomever wants to read. *gulp*