Living with Autism - Part Four

Communication:
How do you communicate with someone who is non-verbal?

I know that I take for granted something as simple as communication, often. Communication is such a vital part of how we exist in a community. Its everywhere from your own little family, circle of friends, co-workers, the general public, etc.

Sam has yet to officially speak any words. This is another reason (in an endless number of reasons) that we are watching Sam constantly during his waking hours.

Unofficially, Sam has said somewhere around a half dozen words. We have heard things that seemed to be used in context and are optimistic that they were actual words. At school he has also done the same thing but only on rare occasions. Whether he has or not, the day to day routine finds Jen and I in a communication funk with our boy.

We parents know our children pretty darn well. Observant and attentive parents have a knack for knowing what their kids need without having to communicate with them verbally (Parents: you know as a parent when your child is hungry, grumpy, not feeling well or may be on the verge of needing a restroom. You know when they are tired, bored, angry, crazy, etc. often you are able to discern their needs without using words)

It is only in the last year (of Sam being 4) that his communication skills have been evolving.


Here's an example of some things Sam uses to communicate:

Thirsty/Hungry:
Sam will go to the kitchen and get a cup out of the kids food/drink drawer (this drawer is filled with an assortment of plastic bowls, plates, and drink cups). If an adult is in the kitchen, he will get their attention (usually by reaching for their hand, grabbing it, then tugging the adult and cup to the fridge. He sets the cup against the fridge, or points with it, and makes sounds.

For food, it is much the same. When the snack cabinet ends up open (we keep all cabinets locked and closed ideally at all times but we have forgetful moments, as humans) we can find Sam picking through the assortment of foods in the cabinet.

Bedtime:
In recent months, Sam has really been active in communicating that it is bedtime by trotting back to the master bedroom, hopping into bed, pulling back the comforter, climbing into bed, pulling the comforter up to cover himself and really there are not many ways to misinterpret what he's after here.

Potty Time:
2010 will be the year we focus on the difficult task ahead of us. If you thought potty training was hard for your normally developing child think again. How do I explain what it is like to diaper a 4 year old child who has a penchant for being naked, pees on the floor or furniture, and who will treat his poop like playdough if given the opportunity?

Sam has been changing his communication lately to give us some hope here. He has, on many occasions, gone to the toilet and stood there (mimicking me) he also will sit for about 20 - 30 seconds on the potty seat. There is some promise here.

Wants/Needs:
Sam is very emotional. He is very loving and sweet and shows his affections with cuddling, hugging, and kissing. On the other end of the spectrum is Sam's wild side. When he gets manic he is in need of physical stimulus. He likes to wrestle and get very physical. If we are not fulfilling the right kind of physical exertion he needs it is common for Sam to set forth on a path of destruction. This can be very exhausting and emotionally draining. We often find ourselves spending a lot of time cleaning up spilled boxes of crackers or cereal, chewed up and spit out food, shredded magazines or newspapers. Nothing is safe regardless of the level of Sam-Proofing.

The coming new year finds both Jen and I feeling optimistic. We feel that Sam will continue to evolve as far as communication is concerned.

Living with Autism - Part Three

Fears:
Time keeps passing by. It seems to go faster and faster even when I consciously make attempts to slow down.

Sam will be 5 in April of 2010.

He will be ready for Kindergarten in the fall of 2010 by age, but nowhere near ready for Kindergarten.

Where will he go?
How will he be looked after when someone needs to be in supervision of him at all times?
How do Jen and I put our trust in someone we simply do not know?

These are questions we didn't really ask all that much when our daughter was making the transition from co-op preschool (where we had a hands on roll in observing her at school) to public school. Rationally, it is easy to come to the conclusion that she is much more capable of being on her own and communicating because she does not have autism. This is another example of how our daughter will be facing challenges in her own family because of the amount of energy it takes her mother and I to keep Sam safe.

We'll be embarking on the journey of finding out answers to these questions after the winter break. I wish that money were not such a huge hurdle for us only for the sake of having enough to send Sam to a specialized school or private school that is equipped to provide him with the kind of support and therapy that he needs.

Fear is an unfortunate companion in my life (I am sure in Jen's as well but I can't speak for her) when it comes to Sam.

I find myself the recipient of countless invitations from friends for a broad range of things from camping, boating, and hiking to parties, bbq's, and dinners. I have ti turn down nearly all of those invitations because my mind plays through a series of scenarios that involve Sam's safety and the amount of energy it takes for me to be with him the entire time (or for Jen).

Not only is it absolutely unreasonable to think that any place or anyone can have things set-up to accommodate Sam, but it is really no fun at all for either Jen or myself to be in a social situation and not be able to be social.

Its no wonder people eventually stop asking. It is very difficult for me because I am, at the core of my being, a social person. I love people and friends as well as the interactions with other adults from ALL walks of life. It is the sociologist in me that keeps this love of 'soaking it all in' alive.

The fear is real. Things like: Running in front of a moving car, cutting himself, electrocution via an electrical outlet, poisoning, the list goes on and on.

Even in our hyper vigilant home and constant monitoring of Sam we have stopped him from actions that are potentially fatal on many occasions. Each time we have to evolve further and adapt to prevent it from happening again.

Aside from the fears in the injury department, there are fears that I keep at stuffed down deep that surface once in a while. These are fears about the future.

Here's a tiny glimpse of some fearful questions and such:

Q: What if I died suddenly and unexpectedly?
A: It would be impossible for Jen to raise the kids alone. Sam would be without me. This thought does not usually surface.

Q: What if Jen were to die suddenly and unexpectedly?
A: Like the thought of my death, this would be the death of me in so many ways. I would also be faced with an impossible task. Like my own death, this one rarely surfaces in order to help me cope with the rest of life with less panic.

Q: Will Sam ever speak? Will he ever be able to communicate?
A: I think he is on the verge of big leaps into communication now. It still could be that he will never effectively communicate though to anyone but those who know him well.

Q: What if Sam wanders off?
A: This would possibly be the most catastrophic thing ever. With no communication ability, no sense of safety... This one stops here because writing it freaks me out.

Q: Will Sam ever experience things like driving, dating, love, going to a school dance, etc.
A: Only time will tell.

Living with Autism - Part Two

Routines(part two):
Before I embark on this post, I wanted to mention that the photos you see here in my blog have been taken by my amazingly talented and wildly successful artist of a wife. A professional photographer in Portland, Oregon who specializes in natural light photography of families, babies, children, pregnant women, occasional weddings and more. You can check her site out HERE

Now, I'll get on with it already!

I believe that one of the things that affects our lives each day (adults I suppose) that we take for granted is our routines. Sure, some of us celebrate them or certain aspects of them; morning paper, cup of coffee or tea, listening to a radio show, going to the same coffee shop, etc.



While we celebrate these aspects of our own routines, I have become hyper-aware of our how I have taken for granted my creature comforts found in 'routines' and how our own family routines are essential to Sam's development. I am confident when I say that I think that both Jen and I are this way.

Since Sam returned to school this Fall, I have watched him hold on tightly to routines and make them vital to his day. Lately things have been evolving as Sam seems to be forming more of his own opinion on these routines (independence).

On Monday, Wednesday and Thursday Sam gets up in the morning and runs out to the family room for some PBS Kids Television. The sound of his thumping little feet makes me happy. Jen and I swoop in to orchestrate this elaborate dance of getting lunch made, breakfast in both Zoe and Sam, and in no time we've got kids clothes on them and making the push out the door and off to school.

I take both kids to school in the morning often. This has allowed me to see how Sam has been grasping, little by little, at more independence. He has gone from being very clingy and wanting to be carried through the river of kids and parents pouring through the corridor at school to insisting that he walk on his own (but refuses to break connection with me or Jen by either holding onto pants, pockets, or leaning into our leg).

Sam has also been changing his routine when he gets into the classroom. Previously, he would require lots of help getting his backpack, coat, etc. situated in his cubby. Now he insists on hanging his own things up.

When I pick Sam up from school lately, I have been letting him walk to the car. I would never have done this a few months back (fearing that he may run straight into the street).


On several occasions (over the past month) Sam and I have been going out to lunch together. He really enjoys doing this with me and we really tend to have a delightful time with each other.

If we go home rather than going out, Sam knows that it is time for Lunch at his little table and he gets to watch Sesame Street. He will come in, take off his shoes, backpack, coat, etc. and he marches over to the little table (one of those bed tables with folding legs) to set it up.

It's pretty sweet to watch him do this with such joy.

Afternoons are one area where routines seem to be lacking. I feel that I need to come up with some new creative solutions there.

We do little things here and there; wrestle, look at books, a movie or recorded show like 'Bear in the Big Blue House'. In warm weather Sam prefers to be in the back yard which is a 'no brainer' but winter puts that play on hold.

We soon arrive at dinner time. This is a routine that seems to be very challenging. Sam does not like to sit still. We battle with him continually to sit, return to the table, or to get off the table.


After dinner comes bedtime. Sam really enjoys this routine (for the most part). Nearly every night I take him to bed. He prefers to have his blanket, a drink of rice milk in a sippy cup, and a pacifier (which we call Phigh Phigh - a word that Zoe created when she was a toddler).

This is the only time that I sing anymore. I am not sure why Sam is the recipient of this rare gift, but he loves it and shows it by signing 'more' and by hand clapping.

When Sam is restless I have been resorting to applying pressure through squeezing him tight (but not too tight), massaging him, compressing his joints (arms and legs) and sometimes I have to lay on top of him (not with my full weight of course, just so that I am on my hands and knees and lower down to help compress him and slow him down a bit.

Most nights it takes about 25 minutes to get him to sleep. On good nights it is 10 minutes and on bad nights it can be more than an hour.

This routine has been going on for a couple of years now (ever since Sam was able to escape from his crib). I expect for it to continue for some time to come. I have come to find myself in love with this time more than feeling burdened by it. The bad nights however, can be very exasperating and trying on the 'love' in this process.

Because of the importance in these routines I have begun to appreciate the things I enjoy more (reading the paper, coffee, breakfast dates with Jen, dropping kids off at school, homework with Zoe, and the list goes on).

Living with Autism - Part One

Sam is 4.
Sam is cute, sweet, loving, emotional, curious, intelligent, flirtatious... These are words that just barely scrape the surface of what makes Sam.

Every day my wife and I are faced with the challenge of being his parents. I cannot explain what this is like really. Very few people have been able to understand what we're faced with in any given 24 hour period. Recently my Mother stayed with us for a month and really had a better idea what life was like for us. I think it changed her life to see just what kind of work goes into life for us.

I have been going through an internal process of organizing the things that have been heavy on my mind lately. In doing so, I have become more aware of my feelings in regard to having a child with special needs (as well as in my life in general). With this realization I have unearthed a host of things that have become almost hypersensitive; compassion, empathy, fear, anger, confidence, intolerance of the intolerant, measuring my life against the perceived lives of others...

I am going to share (thoughts) with you over the next few months as well as these observations of myself.



OBSERVATIONS - Part One - (thinking of others: intolerance/empathy/compassion):

With the increase in children with Autism, and really with special needs in general, spanning the entire spectrum (from severe to highly functioning) you might think that people would show signs of pulling their heads out of their asses when in public places.

Sadly, I fear that is not the case. There are plenty of times when my patience is put to the test and only on very very rare occasions to I confront people.


You're the person who seems to forget that at one time you were a child. A snot nosed obnoxious loud misbehaved little human being. You are the one who gives me the annoyed look when my child(ren) are singing in the store. You're the person who looks at me with contempt because I don't stop my son from hooting down the aisles of the grocery store that is shoving some of the worlds worst music into your precious eardrums.

I ask you this... At what point in your life did you make the transition to being so damn sour?

I have come to find solace in people who are the opposite; empathetic, kind hearted, compassionate moms, dads, aunts, uncles and grandparents. Often times there is a knowing glance or a smile that soothes me. I especially enjoy radiating my kindness right back to the folks who are in this supportive group of people.

The biggest challenge that I face with the people that are intolerant is that it has caused a great deal of anxiety for me.

This anxiety has caused a bit of friction between Jen and I. It often leads me to decisions (such as whether to go to 'X' or to 'Y' for dinner, or to get groceries, etc.) based on some level of potential discomfort and anger that I might feel. These things are based on my assumption of what is likely to happen. Built on a foundation of previous experiences, this is a fucked up and stupid thing. I'll put it on the 'to do' list for future therapy.

What I try to do is be as 'real' with folks as I can. I apply this to strangers and friends alike. I think it is a trait that is suiting me well in my night time occupation at the bar. I get a lot of great feedback from people and I am the first to admit that I am always starving for validation. I also am very aware that I am sometimes intolerant too. It's human. I do try to always remember that when encountering someone who just simply rubs me the wrong way.

I don't have advice for adults who are steeped in the foul stench of complete intolerance. I kind of think that once you reach a certain age you're cured like concrete. I suppose there are rare occasions where people do ride the epiphany wave once they have had eye opening experiences (i.e. my Mom staying here for a month).

Feel free to seek me out and spend some time with me and the kids. Just a couple of hours will give you a glimpse into Sam's world and it never hurts to see how powerful Zoë's love for her brother is.

The Bottom Feeder

Dear Bottom Feeder,

I know you because I have been watching you since I first started in the early spring of 2009.

Through the summer you played like a broken record. It didn't take long for my co-worker and I to realize that you were wearing the same T-shirt Wednesday, Thursday, Friday, and Saturday.

As I made the transition to working the door I had to interact with you directly. Your complaints about the cover charge have turned me from a compassionate man to one who tells you flat out to "pay or turn around and head back out the door".

Your hair is black and it appears to be dirty. The look on your face can only be described as a mix between Bert (of Sesame Street) and Animal (of The Muppets). I see you in the bar on the dance nights with your one drink in hand watching women dance like a hyena fixing its eyes on a wounded wildebeast. It makes me feel a combination of anger, nausea, and disgust. In a way, I hope that you'll do something inappropriate so I can extract you from the bar.

The reason that I have deemed you as 'The Bottom Feeder' is because of your 'end-of-the-night' antics. You are consistently one of the last people left at the end of the night. Because you only bought one drink (for which you didn't tip, or tipped very little for) you are nowhere near drunk.

Like a bottom feeding fish, you circle slowly around your prey and look for the wounded to pounce on and devour. You have a knack for finding the most intoxicated women to 'hit on' and thankfully, all but two women have been able to fend for themselves (that I know of). Thankfully I was able to intervene in those two cases and get them whisked away in a cab, leaving you to head on back to your lair.

Last Friday you somehow succeeded in going home with a member of the opposite sex whom you (from my observations):
- Did not secretly dose with Flunitrazepam
- Seemed to be a nice, outgoing woman
- Actually made out with (see the afore mentioned mix of anger, nausea, & disgust)

Last night (the following Friday) you spent the evening deploying your usual tactics (all while the woman you made out with/went home with) was in the room. Yet, at the end of the night as you circled in your usual way, you finally wound up next to her and she winds up taking you back with her to some unknown location.

To the woman who has such lowered expectations I put out this plea:

Please have more respect for yourself. Please do not encourage sir bottom feeder. Please do not make me put out a sign akin to the 'Do Not Feed The Birds' signs as it would be tacky and likely upset a certain owner of a nearby establishment because of the problems she may have with the 'aesthetics'.

Yours Truly,
Me

Tuesday night

You would think that word would have traveled around Portland since this gig began back in August. In some ways I feel like it has, and then again on those nights where the crowd is sparse I am baffled.

Just like many Tuesday nights before, I am sitting on my perch waiting patiently as I anxiously kill time.

Tonight I have been reflecting on the experience that one might have in entering this establishment.

When people walk though that door they see a narrow hallway lit with red lights overhead. They descend and find me there on Tuesday nights. I am simply myself. The key to having a fantastic interaction with me lays in you being real, courteous, kind and pleasant. Yes, you can flirt or be silly as that is always appreciated. The deal breaker however, is when you act like a shit (i.e. shithead).

You may or may not be surprised to read that there is a high percentage of shitheads.

Thankfully tonight is not full of them. I can look forward to plenty of them being on parade on a Friday or Saturday night.

Somehow I feel like word has to simply get out about Tuesday night. I've tried several routes to get the information out there. I have seen some really great results but on a small scale. Maybe that is the key to success? Winning over new converts one at a time?

The night progressed and the empty room began to fill a bit. A birthday party for two brothers (twins), one of which I interacted with the previous Saturday. I have become amazed at how my memory has been getting better since I have begun working at the bar.

One of the twins still lives in a state that is right in the heart of the country (Kansas, Nebraska, etc.). The two birthday boys suddenly became my guests for the night (this had repercussions of course, that in a moment) when they informed me that they loved coming to the bar so much the other night and they loved how cool I was. Because of this, the bar was the place where all their friends would come meet up and celebrate.

The repercussions of this act on my part came in the following forms:
- Country boy now proclaims that it is me, a door guy that he's met twice, which has made his decision to move to Portland final. I thanked him but assured him that he ought to focus more on the food, beer, and beautiful women that live here because I would, in time, disappoint him.

- His older sister suddenly became my new best friend. This resulted in hugs, pats on my belly, legs, winks, etc. each and every time she passed by. I thought this was funny. I'm okay with high fives and smiles too.

Just when I thought the evening would end on a lovely note there was one guy who came in that did fit that previously described patron category of 'shithead'.

This guy was loud.
This guy was there with his ex-wife (a loud, obnoxious, provocatively dressed asian woman who proved to be a worthy companion... essentially king and queen shitheads).
This guy 'knew' the guy in the band and the band guy's wife (and while they did seem to know him they looked less than excited to have him there).

The only positive aspect of his late arrival with his lovely ex-wife was that the music was almost over and they would have to leave shortly thereafter.

The night drew to a close. I ushered the group upstairs so they could harass the staff up there.

I'm going to chew on the observations about confidence as opposed to pretentiousness and get back to you on that soon.

Hold on tight, here we go.

It's been a long time since I have written online.
Before 'blogging' I was a prolific journal writer on my website. It was often humiliating, honest, trouble making, titillating, and scandalous.

My wife (Jen) seems to be the one who is pushing the most for me to jump back into this pool. I'm doing it and hoping I am not going to get into much trouble.

Many of you know who I am already, but I am going to start by telling you the following:

- I am a stay-at-home Dad
- I work as a door guy / security guy / bar back at a local lounge
- I am married (7 years as of 5.11.2002) to Jennifer Susan (McGreer) Downer
- I have two children; Daughter, Age 6 (Zoë), Son, Age 4 (Sam)
- Sam has Autism Spectrum Disorder (and may have more things diagnosed as he gets older)
- I am 37 years old (as of 6.02.2009)
- I have had a wild ride of a life thus far and will recall some of these adventures and events in an effort to not only share, but to try and relate to the observations being made to these experiences.

Now that we have gotten this out of the way, I will try to brew up some good things to share in the days to come.

You might hate me after some of these thoughts. You might love me too. I am just happy that you may take the time to read the crap that fills my brain and pours out through my finger tips.