Love seeing my boy so happy. It’s like his first trip to summer camp, a new job, and Disney World all combined into one for him. Thanks Matt for letting me see the beauty of the simplest things through your eyes. The friendships you share, the outdoors that you love so much, the animals that are like your own and the joys you find in everything you do. You make me stop and appreciate things I always took for granted. I love that you share that with me and thanks for introducing us to such a wonderful group of people who have your back. You’re truly blessed.
That was my Facebook status last night after coming home from Two Rivers Wildlife Park and nothing could be more true. I am truly in awe watching my son in his Happy Place. He has spent every night except 2 staying in his trailer since it arrived on site 13 days ago. This is certainly much more time than we originally thought he would be there overnight. He’s been doing well and there have been minimal issues so we’ve just been going with the flow.
I’ve always been eager to share Matthew’s successes and advancements. I feel I’ve been equally as forthcoming with his challenges. I try to keep it real. It’s not always about the sunshine and roses. If I want to educate and advocate it can’t be all good all.the.time. You have to know about the bumps. You have to know about the hurdles. You have to know about the lessons that bring him (and us) past the bumps. These past couple of weeks have certainly seen many lessons. And I think that’s what makes the successes so much more magnified. Working beyond the hurdles and finding a way to turn them into teaching moments (that we can all learn something from) can be a challenge in itself at times but if this is going to work we have to be open to the bumps and be willing to learn what they have to teach us.
Fact: Matthew has very little concept of time and money. We have known this for years. It has been a permanent issue on his IPP(IEP) for as long as I can remember. I’d be lying if I said there has been major advancement in these areas. He just doesn’t get it. Two hours for Matthew may as well be 2 days. $20 could be $2 or $200. I can remember when he was younger; we used to try to explain time to him by comparing 30 minutes to an episode of Sponge Bob Squarepants. That was all well and good until the tv show started doing 2 15 minute episodes/show. Then it turned into whether we were talking about a ‘short’ Sponge Bob or a ‘long’ Sponge Bob and that 2 short ones was the same as 1 long one. We tried egg timers, we tried counting down (15 more minutes, 10 more minutes, 5 more minutes, 2 minutes to go…) but then it was still hard for him to transition to another task. If Matthew had to be to work at 9:00 and he looked at a clock (ha ha ha) and saw it was 8:50, that would mean nothing. He wouldn’t comprehend that he best get on his way down the hill because he only has 10 minutes to make it in time. How was this going to work if he was staying at the trailer by himself?
Issue 1: We could send a text but sometimes he doesn’t see them for hours so Mike decided to teach him how to turn the alarm off on his phone. How important it was to get up when the alarm went off couldn’t be stressed enough. Mike set an alarm for when it was time to get up and set another for when it was time to head down the hill. In between it was time to get breakfast, his cup of tea and get ready for work. This was fine and dandy until Sunday night when we were home and he was there and we found out he was working a later shift Monday morning, but his alarm was going to go off for early shift. It wasn’t worth trying to get into deleting the alarm over the phone. The joys of it all. We managed and so did he. At the end of the day that’s all that matters.
Issue 2: The first week, Matthew wanted to experience everything he could all at once and he wanted time to just stop; especially in the evenings. Sitting around the bonfires has easily become a favorite part of life at the park. You know yourself how quickly time can get away from you when you’re sitting around a campfire enjoying yourself. Matthew has always needed his sleep. As a youngster, 12-13 hours sleep was a regular night – once he fell asleep. Even through his teen years 10-12 hours/night wasn’t out of the question. He’s been going on less the last year, for sure, but he still needs a couple of days/week that he’s able to recharge. He wasn’t giving himself that chance at the park. He went and went and went and a week in he crashed. Every night we’d tell him at his normal ‘heading to bed’ time to get going he was still doing his own thing up to 2 hours later. It caught up with him fast. Physically, he was exhausted and his body started to let him know that in a big way. After a couple of days at home he was much better and went back to the park a little wiser (I hope). This is something that we have all encountered before. Matthew is 18 and we are his parents. What do we know? Certainly not what’s best for our 18 year old son. Pretty much the same as what did our parents know when we were that age. We had to learn the hard way, as did/will he. It just reiterates that he needs a couple of days every week to be home and well, just be. Staying at the park is wonderful for him and an experience that will benefit him in more ways than one but he still needs that time away from it all, as well.
I can remember when Matt was in grade 8. His teacher was hell-bent on throwing Matthew to the wolves so he could become independent. That was her only goal as far as he was concerned. He had to start showing some independence. All supports that were put into place for him were withdrawn and he was pretty much left to fend for himself. Left to be independent. She was going to work miracles with him and use him as her example. He had the ability and she felt (without out and out saying so) that he was being coddled. She soon found out that he was not, in fact, being coddled; he was being supported. Supported because there were many areas he was unable to execute the skills necessary to be independent. (Can you tell this word and the connotations she attached to it really annoys me?)
INDEPENDENT can be defined as – not depending on another for livelihood or subsistence.“I wanted to remain independent in old age”
Is anyone truly independent? This definition doesn’t specify whether the “another” is a person or thing. If we looked at it applying to depending on both another person or thing, how can any of us say we are independent?
I could go back as far as Maslow’s Hierarchy of Needs. We all have needs. We depend on certain things for livelihood and subsistence. Our basic (physiological) needs are air, food, water. Once these needs are met we have others: safety and security, love and belonging, esteem, and finally self-actualization. We may find ourselves at different levels on this pyramid at many times through our lives and we may never meet the need of self-actualization or if we do, something may happen to see us revert to a lower stage and need to start building again.
My point is – none of this can be done independently. We all need other people and things in our lives to survive and be successful. We need the basics (food, water, air). We need to feel safe and have shelter, we need to be loved and feel as though we belong, we need to feel good about ourselves and others, and finally there is a need to feel that we are the best that we can be. Not everyone successfully reaches all these needs, like I said, and it would take me much too long to get into the philosophies behind it all but suffice it to say that we all need at least the first 3 levels of needs to be met just to survive a comfortable existence.
I can’t imagine achieving any of this independently. I depend on air. I depend on food, I depend on water. And that’s only the beginning. I depend on knowing what time it is so I can get to my job, I depend on my job so I can collect my paycheque, I depend on my paycheque so I can pay for food and water and my home, I depend on food and water to keep me alive and I depend on my home to keep me safe. All of this depends on me knowing what time it is. By me knowing what time it is my 2 two primary needs are met. Then I have to understand the concept of money so I’ll know if I have enough to pay for the food, the water and my home. See where I’m going with this?? I certainly wish Matthew’s grade 8 teacher did.
We are all interdependent. Period. Yes, some of us are more self-sufficient than others but none of us are truly independent. We all rely on something or someone. I may have exaggerated the definition somewhat for the point of illustration but when you get right down to it, it is what it is. Matthew’s understanding of time and money are crucial components to him being able to have his needs met (according to Maslow).
Ok, I’m done with my tangent. This has been what it’s been like getting him settled. There have definitely been more successes than challenges. He’s keeping the trailer spotless, he’s very comfortable, it took him no time at all to have it feeling like ‘home’, and most importantly – he’s happy. They say a picture speaks 1,000 words? Well, almost 1800 words in why don’t I finish off with a picture of Matthew that speaks 10,000 words to me. This is one of the most genuinely happy pictures of him I have ever had the pleasure of taking.
Until next time…