Friday, December 30, 2011
Tuesday, November 8, 2011
Things are different now though. While we (most of us) get some time off for the holidays, my son doesn't get a break from autism. Since he doesn't get a break from it, we don't get a break from the things that come with having a son with autism. Those things include:
Finding things he'll eat
Making sure he has enough things to occupy him
Fear he'll get into something he shouldn't
Fear he'll melt down
Fear he'll break something expensive
Having a place to change him at a moment's notice
Having a bathroom he can occupy for as long as he wants until he poops
Having a place for him if he decides it's time for a nap (rare)
We have all of these things taken care of in our house. It's easy. It's when we go out to someone else's home that can be tough. There are a few places we go (my parents, my wife's parents and siblings homes) where we don't worry as much. Still it's exhausting trying to enjoy yourself while keeping track of everything that Matthew needs. We eat in shifts. "I'll watch him, you go and eat". "Are you done eating? Ok you watch him so I can eat, I'm starving" etc...It's like only one of us at a time can "enjoy" ourselves at any gathering. I never feel that we can commit to being anywhere for a set period of time. We can show up for something and if it's not working for Matthew for whatever reason, we're out. That's just the way it is. We enter damn near everything with the fear of what will happen and what we'll do if things turn south. 99% of the time the answer is "we'll just go home".
That's where we feel most at peace. That's where we can somewhat let our guards down. It's set up for him. He has places he can go and not get into trouble. His shows are on the DVR. His snacks are in the pantry. He's a happy kid and isn't too bothered by strange places. We're the ones that worry. Our hosts don't make us feel this way.
This season we'll venture out and do some family things. We'll have fun. It will be nice to visit with family...It always is.
But it's always nice to get back home.
Saturday, October 1, 2011
I have a 4 year old son with autism. He is almost completely non verbal, although some progress has been made on that front. Not enough as far as I'm concerned, but these things take time.
This school year he started an autism-specific preschool at a complex where people with disabilities from ages 3 to 22 receive services. Most of the students at this school are profoundly disabled and rely on wheelchairs for mobility.
My son is healthy and I thank God every day for that. I know nothing in this world is guaranteed.
On to my story. This past Thursday as I picked my son up from school, I ran into the head of maintenance at his school. His name is Rick. This man is someone I knew when I was younger. We grew up in the same small town. I ran into him for the first time in years when we did our orientation at the school a few months ago.
He asked me how things were going with my son at the school and in general. I mentioned to him that I was about to take my son for additional therapy at Fresno State. He does 20 hours of preschool and 20 hours of ABA therapy a week. I said "He's 4 and he has a 40 hour a week job". Which is true. He works his butt off all day long. Rick then asked about me. I told him that I'm taking 16 units, student teaching 5 days a week, in class 3 nights a week, working at the VA hospital 20 hours a week and, along with my wife, raising 2 kids and trying to stay sane.
In the span of a 2 minute conversation, Rick offered more compassion and understanding of not only my son's situation, but of my own, than I've received from some people who know me very well. It was genuine and unsolicited...and it meant the world to me. I've asked for (and practically begged for in some cases) understanding. It doesn't come as naturally to some people. Sometimes it doesn't come at all.
And here is this man, who...out of the blue...Lets me know that he realizes how difficult life with a special needs child can be. I was floored by his kindness and compassion.
He gets my son.
He gets me.
He gets it.
I don't expect people without a special needs child to really understand what our lives are like....but it's nice when someone makes the effort.
Sometimes the effort alone is enough.
Rick and a Paraeducator named Jonathan made a Lip Dub video featuring the students and staff at the school.
As for the rest of the people at my son's school?
They get it too.
PS, this is Rick.
Sunday, September 18, 2011
Wednesday, August 24, 2011
Consideration. I've asked for it quite a bit the last few months. Not because I think I'm special or that if I want something so much, it ought to just be given to me without question.
Those who know me, those who know my family, and most importantly, those who know the situation we find ourselves in with our son (Matthew, 4, Autism) are usually really good about taking what we have to do into consideration.
I've worked my butt off to get my son to therapy, preschool, early intervention etc. all while attending school full time. Early on we asked for and received lots of help from grandparents and aunts. They would watch him while my wife worked and while I was in school. It was when he was diagnosed with Autism that all of the extra things that come with it appeared and ate the heart out of every single day of the week.
I've done everything I can since then to handle my son's requirements in-house. Meaning, no more farming him out to family members to watch. He now has places to be and things to do. Quite literally his potential quality of life depends on every day he makes it through therapy. That's how I see it.
I've reinvented the wheel every semester to make my school schedule mesh with his. Take him to preschool, I go to class. Pick him up from preschool, fight through a rushed lunch and get him to ABA with moments to spare. Then I go to class again. Often in a sweaty heap. Sometimes with remnants of snacks, juice or even pee on me. Yep! I do carry a change of clothes for me, just in case. Most evenings my wife picks him up from therapy because I'm in class.
This semester I ran out of ways to make a wheel. My son had to be somewhere at 8:25, I needed to be somewhere else at 8:00. Checkmate.
I've known this was coming for quite some time. I tried to make the powers that be at a certain center of higher education aware of my impending conflict. From May to early August I heard nothing back. When I finally got in to see someone who I was certain would say "just start at 9 and stay an hour late"....I was floored. I was told that my needs would be given no consideration. I was out of luck and I was on my own to find somewhere else that would fit my needs. And if I didn't find something that worked, well.....
No consideration at all.
As luck would have it, I'm a people person. And I know the power of a good contact. I called my contact and asked if there was anything she could do. Sure enough there was. I found a place to call home for this semester. Finally, some consideration.
This was a person that really has no stake in what I've got going on. She is not in my chain of command. She is someone who I've met at my son's IEP's. What really torques me is that the person who is supposed to be looking out for the students in her care, offered nothing at all. Not even a sympathetic tone. Maybe she's on the spectrum.
I'm being vague intentionally. Who knows what she'd do if she got wind of this. I'm giving her way more consideration than she gave me.
Anyways, I've got to get to class.
Sunday, August 21, 2011
I now have a "job". I won't call it a new job because that would imply that I traded my old job for a new one. That isn't the case. I put it in quotations because it's a work study position. Yes I work. Yes I get paid. No I didn't really have to compete for the position.
I am a disabled veteran of the US Air Force. I'm not the injured-in-the-line-of-duty/combat related disabled veteran type. I'm more of a job-related-bad-back-and-hearing-loss type of disabled veteran.
As a benefit, while I am in school, I can work at the local VA hospital and make minimum wage as a part of my VA education package. Tomorrow marks the start of my 5th straight year as a full time college student. A year and a half to go before I'm a fully licensed and credentialed teacher.
This was my 2nd day on the job as a member of "guest services". Basically, I'm a gopher. Someone needs samples taken to the lab? I'm your guy. Pharmacy has a delivery for the ER? I'm on it. Wheel Mr. Doe from his room to xray? Done. I wait by the phone and when it rings, I do whatever is asked pretty much.
I already have a favorite task.
The coffee run.
Each morning when I work, which is sat and sun for the foreseeable future, I'll make the rounds with a 100 cup coffee pot on a cart. This is the cart before I cleaned it top to bottom this morning.
I stop by the nurses stations and the rooms of patients that can have coffee. Then I hit the waiting rooms. Then the lab and pharmacy. Then the ER and ER waiting room. I deliver happiness in little 6 ounce cups to one person at a time.
I've already made a few friends with the nursing staff and a I got a hug from a spouse of a patient who has been patiently bedside for who knows how long and for what reason. This was the second morning I'd brought coffee by to her. I remembered she takes it with 2 sugars and a ton of creamer. I think that's when I earned the hug.
I like this job.
- Posted from my phone. I know...phones are amazing.
Wednesday, July 13, 2011
You see, I'm always in full blown autism dad alert mode....just waiting for some parent with "perfect" kids to trip on the wire and have the autism awareness grenade that is me explode and rip them into tiny, self-righteous bits right in the middle of Target.
Which brings me to our trip to the grocery store yesterday evening.
Same scenario as before. Matthew is in the cart. I'm pushing. My wife and daughter have the list and are leading the way.
Matthew lets out a couple of happy screams as we peruse the outer regions of the produce section. No biggie. There's a lot of people there and everyone is focused on getting in and getting out.
I decide we need bananas. The banana area is crowded, so I leave the cart, and Matthew, with my wife and head in.
Just as I reached the bananas, I heard Matthew squeal again.
And wouldn't you know it...someone tripped on the wire.
I heard "Christ there goes that kid screaming again".
This comment was made by a 40ish male grocery store worker, to his coworker, who stood about 10 feet away (so it was said loud enough for everyone around him to hear).
I was behind him, so I saw his coworker roll his eyes and nod his head in agreement.
I calmly bagged my bananas and turned to face the guy.
"Excuse me....the little boy you're complaining about? That's my son. He has autism. He's 4 and doesn't speak. He gets excited and screams sometimes. He's not throwing a fit...it's just what he does."
He had the look of someone who just got caught talking small smack about someone else's kid.
He threw in a few "I'm sorrys" and a "he's not as loud as some of the kids in here" as I spoke.
I ended up giving a very nutshell explanation of autism to the guy.
I wasn't angry with him. He was quick to apologize and listened to what I had to say. I patted him on the shoulder as I walked away and said "I hear it all the time". Looking back, I hope he took that as, "I hear my son scream all the time" and not "I hear people complain about my son all the time". I may clarify if I ever see him again.
I might have been that guy in my former life. Hell, I know I've been that guy. Maybe I wasn't so open with my complaints, but I'd get annoyed when I saw or heard a kid going bonkers in public.
Not anymore. I give the courtesy to others, and I sometimes foolishly expect to receive it.
This was a minor thing, and I reacted accordingly I believe.
So that's that. The trip wire isn't as sensitive as I thought it was...
But it will always be there, waiting for the next person to step on it. How hard they step determines how hard the grenade explodes.
- Posted from my phone. I know...phones are amazing.
Tuesday, July 5, 2011
She agreed to marry me.
I had planned on asking her at the Lincoln Memorial or the Washington Monument....but when we arrived in DC, it was raining harder than I'd literally ever seen it rain (except maybe in Guam once). So I proposed in the room.
Minutes later, again literally, it stopped raining and we were able to go walk around. I always jump the gun in times like this.
This is her, just about an hour or so after agreeing to a lifetime with me. She looks remarkably calm.
Angelica and I....and Abe. I'm sweating bullets in the humidity (but I've got a little pattern going, which was nice) Dig those shorts too by the way.
Saturday, July 2, 2011
She arrives, we leave 15 minutes later, which gives us 40 minutes to get to the theater, etc.
The last movie we saw in a theater was Hot Tub Time Machine (circa spring break 2010) by the way.
This isn't the topic of this entry, just thought I'd mention it!
Tag Team. It's not just for wrestling anymore.
10 months out of the year, my wife is an elementary school teacher.
10 months out of the year I'm a full time college student.
My wife makes a nice living. She's been teaching for around 14 years and she earns every dime. I don't make any dimes going to school.
I earn my keep by getting good grades and making sure the kids get where they need to be when they need to be there. That's not always easy. Hell it's rarely easy.
What helps us keep from going completely bonkers is that we take turns (this mainly revolves around Matthew, our 4 year old with autism).
If my wife spent the previous night trying to find the exact spongebob episode that he insists must be played (downstairs at 3am I must add) then I know that tonight it's my turn if he pulls the stunt again.
My wife doesn't need to tell or ask me (most of the time!) It's just how we do things.
Yesterday my wife got to go to a small concert in town with her mom and her sisters. A rare and well deserved treat. I stayed home with the kids.
Tag. I'm it.
This morning, I don't even know when, she came downstairs with him and let me sleep in.
Tag. You're it.
I wake up around 645 (for me that's sleeping in) and take over with Matthew. Mostly at this time of the morning it consists of keeping him happy and non screamy. My wife is 10 feet away catching a few needed winks on the couch.
Tag. I'm it.
And that's how we do it. It's not a perfect system and either one of us carries a larger load at times... but we're always within arm's reach of each other.
For a hug.
For a pat on the rear.
For a tag.
- Posted from my phone. I know...phones are amazing.
Thursday, June 30, 2011
So yesterday I looked forward to repeating the success we had the day before. I hoped he wouldn't poop at school so he'd be ready to go once we got home. He needed a haircut so we stopped for a scheduled appt on the way home. We also picked up some dinner.
We get home and the first thing I do is take him to the potty. His pull up was wet, so there goes #1. I sit him down and try the hover maneuver for just a minute or so.
We retreat to the table and have dinner (pizza). He's fine for a bit...getting pizza sauce all over his hands etc.
He then starts to wiggle around and won't eat. Seems to be in a hurry to get out of his booster seat. I tell my wife I'm going to change shirts real quick (because I don't want greasy pizza hands all over a good shirt!).
She gets him down from his chair and they rush off to the bathroom. By the time I arrive in an old shirt, it's all over.
He couldn't hold it....there's some poop in the bowl, and some not in the bowl. Poor little guy.
You might think that this was a failure compared to the previous day's success but I disagree.
He's never been one to broadcast that he's about to poop. One second he's fine, the next he's done. This time though, he got all worked up about it. He didn't protest when my wife rushed him down the hallway to the bathroom. He didn't protest when she sat him down. He finished what he had started seconds earlier.
It's like he knew where he needed to be and was upset that he wasn't there in time.
He was rewarded with his favorite cereal (dry cinnamon toast crunch) just like the day before. I can't wait to get him home to try it again today.
Wednesday, June 29, 2011
My son is 4 and has autism. Potty training can be extra difficult for kids on the spectrum. He's got about a 70% success rate with #1 (if he gets to the bathroom in time....). Even then, it's up to us to take him there as he won't just go on his own yet. Get him to the toilet with perfect timing and he owns #1.
It's #2 we have a problem with.
I'll just be a grown up and refer to it as poop because switching around keyboards on my iPhone is taking too long.
Poop it is.
We've tried to time the poops. We have a decent ballpark guesstimate of when he needs to go, usually. He's about as regular as...well....ok bad choice of words. He's hard to predict.
Usually our efforts to have him poop in the proper place consist of sitting him down on the toilet to huge protests on his part. He pees standing up. He poops standing up. End of story.
We'll sit with him.
And after an hour or so, everyone has a numb butt so we give up. We put his pull up back on, he goes into the living room and poops.
That's how it works.
My wife brought him home from therapy yesterday afternoon. He was in the clothes we sent him in which was a good sign that he hadn't pooped at school. I get down to wrestle around with him and catch a whiff.
There's poop afoot.
We dart to the bathroom and like countless times before, I set him down on the toilet. I have hope in my heart that today, this day, things will be different. My wonderful and supportive wife brings water for me, and juice and crackers for him. She knows we're serious this time.
I break out the iPad. He watches several episodes of Spongebob. He heaves the iPad onto the tile in frustration twice. The otterbox case saves the day repeatedly.
He wants to stand. He needs to poop.
I heard that turning a kid around on the toilet works occasionally. I try that. Now he's really pissed off. We're also out of juice and crackers.
We're now about an hour into this. I call to my wife and tell her I'm losing confidence in my ability to stick with it. She offers some words of encouragement and a hug. My resolve strengthens.
Now he's turned around and facing the proper direction. Still mad. Still needs to poop. Spongebob and the iPad are no longer cutting it. I scoot my chair closer to face him and place my hands under his arms. I lift him ever so slightly into a hovering position about an inch off the toilet seat. I don't know why I did this.
Suddenly he grows quiet. He appears as though he's staring down some threat in the distance. I get the feeling that something is about to happen.
I hear a noise.
I catch a whiff.
And like that, I'm pretty sure he's pooped into the toilet.
I don't have the courage to check the bowl. It seems too good to be true. I call for my wife (who's now preparing dinner) to come in for the unveiling. My daughter joins in as well. I felt like Geraldo Rivera on live TV about to unveil Al Capone's vault. Would it hold treasures? Bodies? Poop?
Or would it be empty?
I slowly lift the boy off the pot.
The vault wasn't empty.
Eat your heart our Geraldo.
My boy pooped in the toilet.
- Posted from my phone. I know...phones are amazing.
Sunday, May 15, 2011
I have over 10GB worth of old videos, cell phone clips and photos compiled so far. Fortunately for me, my wife bought a new desktop computer for me to edit with. My 4 year old school laptop coughs and sputters just trying to gather the clips. I won't even try to render anything on it anymore.
The film will be about Matthew from birth till now, and our journey as parents of a child with Autism.
Concern, disbelief, denial, anger, acceptance....it's all there just waiting for me to put the pieces together.
Till then, here's the sneak peek I created MONTHS ago when I thought I'd have it finished soon.
Boy was I wrong.
Saturday, May 14, 2011
My 4 year old son Matthew has Autism.