Friday, September 14, 2012

I Still Can't Say Goodbye


One of the reasons my father always told me that he became a pediatric rehab physician was because he would have a relationship with his patients for 18+ years (potentially, of course). Teachers, therapists, even family come and go in our children's lives. It's a natural process. It's part of growing up. It's part of maturing. It's one of life's inevitable disappointments. People leave. My son refuses to say "good-bye" to people because he thinks that "good-bye" means you'll never see them again, so he prefers "See you later", or "Keep it real" (I taught him that one). Children have difficulty moving on, especially those who might not be the healthiest emotionally already.

And parents do, too.

We've been having a difficult transition into first grade. As with any rehab process, you just need to keep moving forward. And we're all trying. Lord, we're all trying. One of the biggest consistencies we had going  since this all started (Jack's diagnosis - shortly after his 3rd birthday), was Ms. "Sally" (not her real name, so I'm going to stop using quotes, okay?. Okay). Jack went to a blended pre-school. He was doing well and there was one behavioral aide that seemed to take a liking to him. She was in the other classroom, but always had an anecdote, or piece of advice, or a smile for us at pick-up time. So, we were delighted when we asked for her as Jack's one-on-one into Kinder... and won. She was young, energetic, smart as hell, and gave a shit. Something Jack had done was endearing enough to Ms. Sally for her to accept. We had won the BIA lottery. She was with him at summer school, Kindergarten, summer school again, and First Grade.

But first grade didn't go so well and we had to say good-bye to Ms. Sally. Except, the way it worked out, we never got the chance to say good-bye. So here goes...

Ms. Sally, Jack's downturn is not your fault. You could not have worked harder for him. We've known you for over 2 years (a lifetime in this business) and you are the number one reason for his successes. You spent more time with him than anyone. And you remain his biggest champion. We can not thank you enough for always remaining positive with him. Our last conversation was walking back to his classroom after he had forgotten his backpack. I told you that I was losing hope. You asked me not to, because you hadn't. It's so hard to not meet you every morning. It's hard to watch Jack scan the schoolyard and start to stim every morning. He doesn't express this well, but he misses your open arms. He misses the comfort of starting your day with familiarity. The way we feel weird if we didn't kiss our spouse good-bye before we left for work, or didn't end a conversation with "love you".

We know how much you loved him. We may never know, however, how much he loved you. But Julie and I do. Thank you for helping him. Thank you for not giving up hope. Thank you for not mentioning it the times you knew I had been crying. Thanks for the smiles. You are an exceptional young woman. Your compassion without condescension will serve you well. We are forever humbled and indebted to you, and love you.

This blog was intended to be about emotionally challenged children learning to say good bye, but it's clearly about us as parents. Therapists are going to come and go, we've had several who we were very close to... some are even in this blog community. Teachers are going to come and go, we've had several who we were very close to... some are even in this blog community.

But Champions stay forever.

And I still can't say Good-bye.

Keep it real, Ms. Sally, Keep it real.

Wednesday, September 12, 2012

Welcome to the Machine

Here is a list of things I've learned from various professionals along this journey we call autism. Note: These are not meant to be evidence based conclusions, rather anecdotal evidence from a parent about my child. Although, I am an expert on raising a child with special needs... so maybe not that anecdotal.

From Pediatricians:

1. There are no dysmorphic features exclusively tied to autism.
     Although, many of us have developed a good "A-dar" it is impossible to diagnose a child from a picture.
2. There is no scientific or genetic test for autism, although there are several genetic markers and                                 commonalities in the autistic brain.  So, at least, not yet.
3. Some ailments may not be related to your child's autism. Example: you didn't get the chicken pox because of the autism.

From ABA Therapists:

1. It is SOOOOOO much easier to direct your child than to re-direct your child. Kind of simple, it is easier to lead than to follow.
2. Spanking any child because they were hitting is counterproductive.
3. Time-outs should be used sparingly and with great importance. And sometimes the time-out is for you.
4. ABA techniques work amazingly well on NT kids!
5. All behaviors have a purpose.

From Occupational Therapists:

1. There are more than 5 senses (with the extra three being sub-divisions of touch/feel).
2. "Clumsy" is not a diagnosis.
3. Proprioceptive Processing Disorder is.
4. The symptoms of a sensory processing disorder affect much more than simply that sense.
5. "Poor Trunk strength" or "Low tone" isn't something you lift weights to correct.

From Schools (Teachers and administrators):

1. All kids do strange/weird things sometimes.
2. Most first graders are fascinated/obsessed with the losing a tooth process.
3. The NT kids in your class are not cruel, but they will discover that your child is different between Kindergarten and First Grade.
4. 3 or 4 of the NT kids in your child's class (always girls) will really want to help reach your child, and go out of their way to include them. God bless those typical peer models.
5. Fighting for as many services as you can get, might not be best for your child. What I mean is, the school district is not necessarily your enemy and you should be fighting for what you think is best for the child... not for simply as much as you can get.
6. The school district might not have the money available for "what's best for your child"... but, that's when you fight them.
7. You are going to have a long relationship with your school district... try to make it a pleasant one.

From your child:

1. Your child already knows he/she is different and probably has real trouble expressing it.
2. Your child has emotions, but might have real trouble expressing them.
3. Your child loves you, but might have real trouble expressing it.
4. Your child appreciates all that you have done for them, but has real trouble expressing it.
5. You have to work harder than NT parents, and don't always get to reap the rewards. But, sometimes... you do.

In a few days or so, I'll write a list of the things I wish I hadn't learned, and it will be a lot more comical.

Thanks for reading. This is a good list to give to a friend that just had a child diagnosed, because I'm fairly certain if you've been in the game for a bit, you already knew all these things.


Tuesday, September 11, 2012


If you made it here, you've noticed I have changed the name of my blog and corresponding Facebook page from "Autism Sucks" to "Find my Eyes". There are several reasons:

1. I never liked the title "Autism Sucks". Don't get me wrong, I think it does, and still do.

2. "Autism Sucks" is/was offensive. I agree. I received all of your protest emails and comments, and since I was never married to the title anyway... I listened. I don't want my child growing up thinking I hate him... he has enough trouble with emotions already, why pile on guilt. Don't get me wrong, however, I still think Autism Sucks and you won't be finding any flowery "My Child's Autism is a gift" type crap here. This is still a blog for parents raising children with special needs, and, that is hard effin' work... at times, it even sucks.

3. Several of my friends and/or professionals could not be affiliated with an "Autism Sucks" facebook page. Understood. Welcome.

4. "Find My Eyes" is the most common saying around our house. Any ABA families will know why. Besides, "Calm the fuck down" was already taken.

5. My wife hated "Autism Sucks" and I listen to her (mostly).

If you loved "Autism Sucks", I apologize for the change. You are more than welcome to join the new Facebook page (Find my Eyes). It has the same banner.

Additionally, I'm no longer going to remain anonymous.

My name is Jordan. I live in the Los Angeles area. I am 37 and a stay at home dad.

My son is Jack. He's almost 6. He started first grade about three weeks ago and it has not been an easy transition for him (or us).

It's liberating to not try to remain anonymous, and, to finally meet you all.

This is my son and I.


Thursday, September 6, 2012

The Difference

We talk so much about bullying these days. Blogs and talk shows are filled with new alarming numbers of the increase in incidents. This group. That group. These kids. Those kids. This is a subject that warrants attention. This is a subject that, as special needs parents, we are concerned about. Our kids are the victims. None of us are bullies.

Or are we...

Name-calling is perhaps the largest component of bullying, and this is why I am disgusted and embarrassed by us.

There isn't a morning that doesn't go by that my Facebook walls and morning news talk shows aren't flooded with news of our upcoming presidential election (November 2012 for my international readers). Every morning I get to start my day with clever slogans or biting commentary or alarming expose of how terrible Obama or Romney are.

If I disagree with the tiniest bill the democratic party supports, I am a racist, a homophobe, a sexist, or an elitist.

If I disagree with the tiniest bill the Republican party supports, I am uneducated, lazy, or Godless.

I am none of those things.

I don't appreciate being bombarded continually with these accusations. The truth is I am a "decline to state" party member. Often called "Independents", but people who tell you they are registered "Independent" are lying, because (at least in 1992 when I first registered to vote, and again in 2004 when I moved and re-registered), "Independent" was not a choice on your registration card... "Decline to State" was, or you could leave it blank. So, perhaps I am an elitist because I answer to nobody's platform. They answer to mine. In November I will walk into my voting booth with my pen in hand and exercise my Constitutional right to vote for the candidate that represents 100% of my beliefs... myself. This will be the 6th Presidential election straight that I receive at least one vote.

There is nothing wrong with being a party member. There is nothing wrong with liking a candidate so much you (gasp) cross party lines for his/her vote.

But there is something very wrong with all the hate speech for your opposition. So, please, think about what you're forwarding about how dumb Romney is. Think about what you're forwarding about how dumb Obama is.

Your opposition is not dumb, just different.

Isn't that what we try to champion in our children on the school playground?

My child is not dumb, just different.

Has a familiar ring to it, doesn't it?

An end note here: This post is not meant to inspire anyone to leave comments about how correct their candidate is, or how ignorant I am by not seeing how incorrect the other is. We all have our own beliefs, and we should vote accordingly. I don't think there is one American that is going to change their vote because one Facebook friend posted a crudely drawn cartoon with a clever statement on it.