A Day with Matthew

Matthew & the Marines

My note last month about life with a special needs son certainly brought in the comments. Most people haven’t spent much time in close proximity to a handicapped person. And apparently, a lot of our life challenges are not obvious to the casual observer.

I’m sure I’ve said this many times but Matthew does best with a set routine. Maybe you do too, but most likely changes in your routine aren’t enough to cause a meltdown like they can Matthew. Most likely you are also able to walk away from something that has your attention with more ease than Matthew. To better imagine why not share a day with Matthew with you?

Like many we get up the same time each day. We begin by making sure Matthew gets his clothes on the right way…fortunately, he finally has figured out that his shoes feel better when on the right feet. But pants on backwards is a daily question. Then Matthew runs down to his computer to begin playing his favorite game. Given the opportunity I think he’d be on  his computer 24/7 so long ago I got smart and found a program that has time limits to access the computer. For example, it comes on at 8am and takes a 15 minute break at 10. There is a funny little wizard that pops on the screen and reminds Matthew that he should go to the bathroom. He is also reminded to eat breakfast. If I want to go some place Matthew checks to make sure his computer is paused at the right spot. He has played the same game for years and has it well memorized.  I like the computer timer because when it takes a break we take advantage of the time and do our chores, taking care of the wash, vacuuming, dusting, and the like.

Picking and Eating Strawberries

When we run an errand it’s important that I tell Matthew where we are going. He pays attention to every detail and most especially if he thinks we are supposed to be going home but make a wrong turn. I still can lose him in a store but he has never left a building and I’ve learned to look first in the video or toy area. I think it’s important to get out and do things regularly, if not daily. These changes to the routine seem to keep Matthew from becoming too set in his ways.

In the afternoons, when we’re home, Matthew will often decided he’s hungry.  Fortunately, he has stopped hiding the open ice cream carton (with spoon and that I would not find until it was all melted). If there is soda available he will drink it… all… If there are bananas he will eat them… all… I’ve seen other autistic kids with these tendencies.  If one piece of sliced cheese tastes good then why stop until it’s all gone? So we’ve moved the soda into the locked bedroom and buy bananas in small bunches. 

Sometimes friends will come by and suddenly the boy who was glued to his computer becomes “Chatty Patty”.  Matthew has figured out that he can show others his trusty and well worn TV Guide and have whole conversations without him having to utter a word.  He’d like to also show off ALL of his movies (but they are locked in that same room as the soda). 

Emotions are a challenge for autistic people and certainly for Matthew. He has a difficult time when special people come into the house. He often hides his face or, if it’s someone like Grandpa, he runs and hides. As best I can tell it’s the feeling that you have when you haven’t seen a loved one in some time. It’s a powerful emotion to be sure and one that Matthew has trouble handling. Fortunately, as soon as he’s redirected he’ll run and greet the person. I have to laugh though because it’s a little harder when he sees one of his favorite TV hero’s. He’ll actually run out of the room while I’m yelling at him to hurry back and watch before he misses seeing the person.

Matthew & Grandpa

Meals, while not a challenge, are not quite the same as in other households. We eat gluten free which means mostly that we don’t eat any wheat.  Remember the bananas story? Well, the same holds true for non-gluten free foods that might be in the house so years ago we eliminated the temptations.  Oh, there’s still the odd loaf of regular bread but only because Matthew has a GF option that is as good or better tasting. Cake, cookies and other desserts are only gluten free. The good thing is that there are now many more options and we have learned to bake some pretty tasty treats. That ole computer timer comes back on at 6pm and reminds Matthew that it’s time for a break and to eat dinner. He is a willing helper when it comes to making something that tastes good and loves to check the progress of whatever is cooking. Unfortunately, clean up is considered a chore and not something to look forward to.

Our evening routine is most probably the most routine of all. If there is something on TV that Matthew likes he’ll watch but most often he is found sitting back at the computer playing his game and listening to the show. He always seems to glance up just when I switch the channel and heaven forbid I put it on Fox News! Nine o’clock comes and the computer says good night so he can sit with dad and watch something or head upstairs. Every morning I help him shave and every evening Bob helps him get ready for bed and boy, he doesn’t like us to switch roles. Every night, and I mean every, Matthew goes to bed listening to his Adventures in Odyssey tapes. Sometimes he can’t decide which tape he wants so he will put one in and then switch it out, put one in and switch it out, etc., etc. until he finally finds the right story. When he was young he was also hyperactive and often would stay up late into the night. We are thankful he has moved past this stage.

In the morning we start all over again. So that’s it. I was talking to my friend today who has an autistic daughter and who cares for two other autistic teen boys. While they all have some very definite similarities they are also extremely different. If you have the opportunity to talk with a special needs person do take it. You may find a person who is completely disinterested in conversation or you may find another Matthew who can’t wait to show or tell you something exciting.

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