World According to Matt
Where the Mysteries of Autism are Revealed One Story at a Time
May 2015
Got a conure parrot.....Max. Great bond going on between Max and Matt - can you tell?
An unexpected gift....
I had mentioned last week to Matt on the phone that I was limping around with an injured foot. When he came over for the weekend he saw me sitting - a lot - with my foot propped up. It was a great visit (and the Superbowl game was so fun with Matt here!). Matt never mentioned my foot... he doesn't do that.
When he was ready to go on back to his cozy home yesterday something awesome happened.
It had been a long weekend for him with mom and dad - he stayed 2 nights instead of just one. Now Hippie Hubby was taking him back to his place and me? Well.... I had to stay home, sit around, and prop that dang foot. Hippie Hubby was going to take him grocery shopping, and to get pizza, and I will admit I was feeling left out and jealous.... that's my job after all.
Matt had his bags packed ready to go and in the hallway. My bedroom door was open and I was watching him do the "I'm leaving now" routine. He looked into my room and noted I had my foot propped on a pillow and suddenly his face lit up, "OH!" he exclaimed, marching back to his bedroom. Within seconds he emerged again and came straight into my bedroom - with a gift. He proudly handed it to me - a beautiful cartoon drawing of Sylvester and Tweety. I think this was a get-well card, Matt style. Something he knew would put a smile on my face and joy in my heart.
It's beautifully done, not an eraser mark anywhere, and dated Jan. 29 - the day I told him my foot was hurt.
I can usually get Matt to draw me something if I ask, and he knows how much they mean to me. He gives me a drawing every Mother's Day and another at the start of school for my office wall. But he's never just done one for the heck of it and given it to me...there's always been a reason. This one - out of the blue and unexpected - touched my heart so deeply. My face lit up when I saw it and Matt smiled from ear to ear. "Awww.... thanks Matt!" I exclaimed. Matt bent down and hugged me tight, gave me a kiss, and then in his proud Matt voice, told me about each detail he had added.... a description that was fluent and understandable with not a break in his speech, not a stutter nor sign there was any difficulty completing. His description of this beautiful drawing was an added bonus.
How can I not smile at the characters, be dazzled by the colors and touched by the sentiment? How can I not feel on top of the world when I hear my son speak so well - as if there were no roadblocks on the thoughts-to-speech neural highway. My heart literally soared. Speaking so well is a very, very, rare event.
Now I can't wait to hang it on my office wall..... and each time I look at it I will think of the way he did this with no special occasion, no prompting. I will think of its perfection and bold colors. I will remember his fluent voice and the big hug.... and the kiss.
Matt....light of my life, you heal me in more ways than you will ever know....
April 2015
Matt called me from Kmart. He was out and about on this beautiful spring day - and it was early (3pm) Wow - what an amazing young man. After hanging up with him it occurred to me - I felt no fear for him.... this mom is slowly learning how to just enjoy watching him take flight without worrying about the height for which he soars.
Take flight, Matt. Spread those wings and see the world!
April 2015
Matt called me from Kmart. He was out and about on this beautiful spring day - and it was early (3pm) Wow - what an amazing young man. After hanging up with him it occurred to me - I felt no fear for him.... this mom is slowly learning how to just enjoy watching him take flight without worrying about the height for which he soars.
Take flight, Matt. Spread those wings and see the world!
March 2015
Guess who is now a member of the Rec Center? Oh yeah, and ..... he's planning his first adventure for Tuesday. Tuesdays and Thursdays when it is sunny... those were his words. So on beautiful spring days my son will walk to the rec center, show his ID card, and enter the world of community and fitness and strangers - this is HUGE!!! I wish he would have picked a day this week so I could go too (spring break, you know) but maybe that is why he chose next week... so momma couldn't come Click to add text, images, and other content
Christmas 2014, and the Battle of the Wrapping paper Tubes
It was an unusually warm Christmas Eve when the time was announced for the battle to commence. Each opponent stood with ninja-like readiness, the titans of the game standing, facing each other and ready to battle to the death.
It was hard to tell who struck first. As the light-saber swords whisked through the air the sounds of laughter and several "HA!" filled the air. Within minutes, Christopher's sword bent, resulting in a limp saber that was difficult to aim. His ninja cunning was superb, he immediately took the floppy tube, tore it half and turned it into nunchucks. Matt was taken off guard by this swift turn of events, but continued on flashing his sword with ninja-like reflexes until... his bent too.
Christopher, being the good brother that he is, traded weapons. The battle continued. The second sword was immediately turned into nunchucks too, and the battle raged on. The swirl of short tubes sliced through the air in between connections with the each participants body "whomps!", when a strategic jab would make contact with the opponent's head.
Sadly, Christopher's weapons unfurled first leaving him unarmed against the mighty warrior, Matt. Matt, having a heart of gold smacked his brother one last time before declaring himself the winner.
Battle of the wrapping paper tubes.... best one ever. Merry Christmas, everyone!
November 11
The Doctor Visit to Oz
Who could predict that Matt could sleep at night without there being something seriously wrong? After all, this is a guy who gets up at 6pm and is wide open until 7am. He calls at 7am as he is getting ready for bed. It usually takes him another hour before he crashes. So when he was discovered sleeping from 10:30pm – 2am red flags went up. Something must be up… right? A fluke here and there is no big thing because he does on occasion try to get up early (early being 1:00pm in the afternoon) but when it happens in a streak like this past week then something’s up – has to be, right?
I talked to Matt this morning and he was sounding good, told me what he watched on TV last night and the games he played. Just after I talk with him, hippie hubby calls and tells me that he called Matt last night – several times. When Matt finally answered the phone he told Tom he was “just taking a nap”.
A four hour nap – at night, when it’s dark . . . Something is surely not right. Keep in mind that Matt does not respond to pain. He could have a third degree burn and you would never know, a toothache, a headache, a broken arm – he does not respond to pain (it does not mean he doesn’t feel it… he just doesn’t respond to it. It’s complicated).
So, after much personal debate about whether to go over and check him, take him to a doctor, or just wait and go over tonight, I decided that a trip to the doctor was in order. I am not a hysterical, worrier mom, nor a determined get-in-your-face warrior mom either. At least, not anymore– those monikers were of a different time when Matt was little and I had to push the medical professionals in a new direction. But let’s consider now that the last time Matt saw a doctor was in 2011… 3 years ago, to have a suspicious mole removed. He is the healthiest guy I know, with his last antibiotic taken 19 years ago – wow. Nineteen years. I’ve changed over those years too. I let the ignorance slide because quite frankly, you can’t fix stupid when there’s arrogance involved – and doctors tend to be arrogant.
Imagine now how I felt when after finally succumbing to the need to have my son seen by a doctor that I find that today of all days, Matt’s doctor was not in the office. He would have to see another doctor. I let them know Matt was autistic. Driving to town I had 2 repeating thoughts; what’s going on with Matt? And *sigh* I will have train another doctor (– dear Lord help us).
I called Matt and told him I was on my way, and that I would be taking him to see a doctor this morning. Matt’s reply was a resigned, “okay”. No argument, no telling me he was fine. Another red-flag went up. When I arrived he was laying on his couch with a pillow over his head (normal sleep position). He slowly rose to greet me. The poor guy was tired. I told him why I wanted a doctor to check him out and explained that it would most likely require some blood-work. We practiced each step of a blood draw, ending in how to hold his arm still. He almost panicked – but I reminded him of his courage, his age, and his adulthood status – and the panic passed. I told him the doctor would most likely push on his belly – so we practiced that too. When I pushed on Matt’s lower right side, he jumped – his knees bending to a half-fetal position. “Does that hurt?” I asked him. “No, I’m fine.” (well of course). “Can I try that again?” I asked. I pushed down again in the same spot. He was ready for it that second time and although he still flinched, it was far less of a reaction than the first. Hmmmm? . . . Appendix?? Yep, we’re definitely going to see a doctor.
After filling out forms a nurse came out and called his name. Her distance from him, her expressions on her face, even the hesitation in her voice – all said she was scared of my son. Silly nurse – she should have been scared of me, not him. As I watched her in her body language I thought, ‘Seriously? Don’t they teach you about autism in nursing school?’ She had no interaction with him (not even a smile) until she had to take his pulse (using a pulse-ox) and blood pressure. She never explained a thing to him and Matt was fearful of her. I talked him through each, explained what they were for and gave her my best ‘Liz- look’ (it’s an evil – go-to-hell look that I reserve for those most incompetent of people).
Enter the doctor. The doctor took a short history and did a short physical. He barely touched my son. Matt never flinched when his lower right side was touched – and I do mean touched. The doctor didn’t press down at all. Since when does having autism mean that a physical is just cursory glance? How many children are sick and their illness not discovered because doctors and nurses are afraid to touch them?
The doctor turned toward me and basically asked what I wanted him to do… so I gave him my list of blood-work and request for a chest x-ray. I told him of Matt’s previous bout with pneumonia – no symptoms except a low grade fever and a change in his sleeping patterns. I told him he didn’t even cough. Of course, the doctor says, “You can’t have pneumonia without a cough”, for which I kindly replied, “That’s what the first doctor said that missed it. The second doctor an hour later took an x-ray and found 1 lung completely full and other half full and he spent a week in the hospital.”
This new doctor then gave me the look – you know the one – the one where they are ‘all-knowing’ and moms are just peons, ignorant and silly. He decided he would order the bloodwork – but not an x-ray, just to prove his point. He ordered a urine analysis too – though I really didn’t think he needed that (because there are very significant smells that go with that – smells Matt did not have).
Oh goody, here comes Miss Sunshine nurse with a urine cup. Silly nurse handed the cup to me. I nodded toward Matt. She grudgingly handed the cup to Matt – with no explanation as to what it was for. *sigh, again*
I walked Matt down the hall to the bathroom – which was right next to the lab and explained what to do. Matt, in his wisdom, looked at the cup, then at me and wrinkled his nose and uttered, “Ewwww”, then walked into the bathroom. The walls are thin and you could hear him doing an outer monologue, “What kind of place is this? Happy Veteran’s Day (sarcasm) … oh yes, it’s Veteran’s day (happy) ……ahhhh (frustration) …….Okay, almost done, almost outta here (resigned).”
As Matt was getting his sample and speaking, I was smiling… thinking, yep, that’s the guy I know and love.
Two lab techs in the lab looked over and I explained to them that Matt was autistic and that we had practiced this, but I would really appreciate it if when they took his blood they announced each step – and they were happy to help. (Excellent lab staff). Matt held steady, looked away at the crucial insertion of the needle, made a face that said ‘ouch’ and then in a flash it was all over. The tech asked him which band-aide he wanted and seeing the wonderful cartoon assortment, forgot that he had just had a needle in his arm, and replied, “Roadrunner!”
Back to the room we went to await the results…..
When the doctor returned with the “All is normal” result he smirked – seriously. How did I keep from head-slamming him into the exam table? I must be seriously mellowing in my old age. Or maybe, I have seen this type of interchange enough times to know that awareness is not reaching those that really need it, and some are too arrogant to even realize they need it. To top off the visit, this soft-spoken, condescending physician remarked on how he knew someone with an autistic child and they made sure he was not left alone, that he had a caregiver at all times and he just cut short of saying – “and why don’t you?” So this is what independence is to those with no or very little autism awareness – an incompetent mother? He basically called me a bad mother for allowing my son to be independent! Between you and me, that is why I wrote the book – so idiots like this may learn something about freedom, and longing and other very human emotions that are part of autism. I bet this guy still thinks of autism as robot-like.
I’m glad I took him so that he could at least have the blood-work done, but all else was basically a waste of time and energy. As I contemplate the signs and symptoms I have come up with 3 things it could be.
1. A slowly festering appendix
2. Another round of silent pneumonia
3. A virus… a simple virus that has him worn out and tired and screwing up his sleep cycle.
I want to think its number 3 – but I am watching for possibilities 1 and 2, and to be safe, Matt is spending today with me and tomorrow with Tom.
This is what an illness is like in the land of autism. And those professionals interacting (and I use that term loosely) with my son are like Dorothy in the land of OZ. When dealing with a person with ASD - especially as severe as Matt’s - I just want to scream, “People, you are not in Kansas anymore!” Toto has more sense about how to treat people than these people did.
Where’s those flying monkeys when you need them?
November 7
My mind has been jumping from one thing to another all week.....I have my first book-signing event (EVER!) and Matt has been in his apartment now for 1 full year. It's also 30 years ago that my son Daniel, was born - then died (later the same day) and so, as you can imagine, my head is spinning...
So... let's talk about all this as each relates to the other.
Tomorrow is my very first official book-signing (Wythe County library, 10-12) and I am nervous... I don't know how this all works, and I am winging it. I have everything I think I will need, but how does one know how many books to bring to these event? The boxes are heavy.... I am not strong (no upper body strength) ..... too many boxes and I may collapse in a heap in the library parking lot, but if I don't bring enough I will feel guilty - yes, guilty. Each dollar that is made from the sale of these books belongs to Matt. He has a dream - I am his "bringer of dreams" and my first book is for him. His dream has just recently been discovered - he wants to be a photographer. Matt can buy a camera, and photo albums and a tripod and get started on this new dream of his. I could not afford such luxuries without the extra income. I am looking forward to Matt shopping for actual items that will enhance his desire to be a photographer.
Is it a co-incidence that Matt has decided what he wants to pursue just as the book is getting ready to go on sale? Is it co-incidence that the first book-signing is on the first anniversary of his independence?
And there's another connection and my mind has been deep in thought for days on this. My son, Daniel, would have been 30 years old tomorrow (RIP, my sweet son). If Daniel would have survived, I never would have had Matt.
The implications of all these ties suggests there was a plan in place the whole time. Was it fate that Matt had some of the best teachers on the planet? The best speech therapist in the world? Was it fate that Matt's paraprofessional, an angel to be sure, was just the right person to take my place all day while Matt was in school - protect him, help him, guide him in his work and in his interactions? Was it all just a co-incidence?
Tomorrow I will be selling my book for the first time as a real, solid, hold-in -your hand book, and with all the stars aligning I feel as if it was all meant to happen exactly as it has. But feeling all of that (and writing all of that) makes it seem as if it were all so easy.... but Matt and I know better. We know the courage it took for him, the amount of focus it took for me. We know.... we carved a path alone. We did this before there was an increase in autism, before anyone had even heard the term. There was no Internet, no Autism Speaks, no awareness of any kind - and still, look at the progress he made . . . it fills my heart.
And so tomorrow is the first big day of a whole new journey. I love writing, I love watching and learning and sharing what I find. Matt loves taking pictures, getting them printed and collecting his favorites. We are still on that path, but the scenery sure has changed. I can see a brightness ahead - a future that is fulfilling for us both.
And you - yes, you - have been a very large part of this journey. Thank you all, for caring about this sweet man that is my son. For supporting his dreams and for reading my stories. You . . . you have made this happen for us.
Thank you - and I will see you soon.
November 2
Went grocery shopping as usual with Matt before taking him back to his place. When we finally met up later I noted a bag of microwave burgers in the cart! Woohoo! He bought buns and pickles too. Hmmm... wonder what he's planning to eat this week?
The snow spoiled our planned party for last night and his anniversary party has been now moved to the Nov. 15. As long as he was at my house I got him to try the burgers, showed him how to cook them and waited for the verdict. Looking in his cart and seeing them means yes, he likes them! Maybe burgers will be on the menu for his party? Even if not, i was nice to see him with something new.
In addition to the awesome addition to his 15 foods, Matt also called me on the cell phone to tell me he was ready to go - he was done grocery shopping. I had just said to Tom today that I thought he would call me first pretty soon, and what a great day that would be - and then... he did. I always call him to see how he's doing while roaming in the store. I always give him lots of time. I wait for the call - it doesn't come and then I end up calling him. Tonight - he called ME!
So, I would say that today has been a good day in the world according to Matt.
October 23, 2014
Ever have a day that just felt ..."perfect"? That was yesterday for me. Great weather, perfect timing to each event, good food, and a fun time. During our lunch as we were discussing the amazing photographs Matt was taking I asked him if he would like to publish a book on his photography. Not only did he say "YES!" he said it with enthusiasm and got excited about doing it - excited enough to want a new camera, pick places to photograph, and in that moment I was hit with the "big picture".
Matt has been an artist since before he was autistic - it's a mom thing to know such things. I have always focused on his drawings, he did so many of them and he did them every single day. I always assumed his art would be his ticket to a paycheck.
I knew he loved photography - and the only course he would take at the college was photography - but I never saw it as more than a hobby.... until he moved to his own place.
Over the past year I have watched him make photo album after photo album. We have talked about perspectives and lighting and visual art, but it never struck me as more than conversation - until yesterday.
As always, Matt wished to go off on his own at the Mill. As always, I watched him to see where he was and what he was up to and read between the lines of non-verbal behavior. I watched him lay down on the sidewalk to get a picture of leaves, sit on the edge of a bank to get a picture of the sunlight on a small pool of water, and do 360 shots taking a half-step turn for each picture. Hundreds of pictures....
Matt showed them to me - beautiful, artistic, unique - all describe his view of the world around him. Of course..... He has different view and a different perspective. I've known this for most of his life - why did it take so long to hit me as to what he could do with it?
So - yes, Matt is now officially going to make a book of his photography. "From a Different View". We have set a deadline for date to publish at 2 years - in 2016. He has homework - deciding where he wants to get specific pictures for his book and for each season. He has purpose - going for walks can now be just about taking photos and not doing a grocery run. Life, for Matt, has taken on a new meaning - and his joy at this direction is on a path in the pursuit of happiness AND fulfillment.
So please join me in raising your glass (coffee mug, soda bottle, etc)....
Here's to Matt. May this quest and dream be the path you have been looking for, and may all your dreams come true. *clink*
October 14
We were in the local Wal-mart. Matt goes his way to do his shopping and I go mine - to walk around aimlessly looking at things I don't need. Sometime later I am walking toward the area Matt loves most - videos, games and pictures. I see him a split second before he sees me. Matt immediately juts his arm over his head and waves enthusiastically. This means he found something he really likes.
As I approach his cart he reaches in and pulls out a t-shirt - minions with "Bee Doo, Bee Doo" on it and starts to laugh. I smile and as I'm telling him what a great find he has he begins to show me everything in his cart - every single thing - even each food item - and lastly picks up a small photo album and gleams. The presence of a photo album tells me he's getting pictures made.
"Are you getting some new photos made?" I inquire - knowing the answer. "Yes! Virginia Tech!" he replies. I am thinking, well of course they are.
He's in a great mood, has more shopping to do, so I wander off again.... and decide to call hippie hubby. "You should call Matt - he's in great mood!" I tell him, that's code for "Matt will speak today".
Tom calls Matt.
When I next see Matt we are at the front of the store and Matt is on the phone still talking to Tom. I smile - knowing how wonderful it is when Matt has something to say. I wait a second and then ask him which direction to go.....
Matt, still on the phone, gives me THE HAND. He extends his arm and throws up his hand in a "halt" gesture - which stays there as he continues to speak to Tom.
I got the THE HAND!!!
I'm am trying so very hard not to laugh out loud, so I turn and walk a few paces and giggle to myself. I find an open register and proceed through the tight passage as a cow through a chute... moving slowly. Matt comes up behind me, "I was talking to DADDY!" he exclaims, giving me the reason for the "halt" gesture.
"I know! That's why I gave you some privacy". I smiled. He smiled in return - knowing I had not been offended by his gesture and all was well.
Matt gave me THE HAND!!! Personally, I LOVED IT! What that simple gesture meant to me was that Matt felt secure enough in our relationship to do it, that his priorities matter over mine, and that he was in charge. What's to be offended by?
Yes, ladies and gentlemen, I am now among a select group of people who have gotten THE HAND - and I am very honored to be one of them. Woohoo!
October 18, 2014
We are doing minions this year for our Halloween pumpkins. We gathered supplies and went pumpkin shopping and got ready to create.
Matt needed guidance - but that's all. I showed him the steps, showed him how to attach each item, use the paint brushes, cut pipe and pipe cleaners. I showed him him how to make goggles and eyes. Matt watched, practiced a bit and then... he sat down and just went for it. As he was attaching the hair he said, "Just like doing crafts at Sheffey.."
Sheffey was his grade school - he was there prior to his memory loss. Matt had a memory, sparked by making minions.
So not only did I get full participation and interaction with my son tonight, I got a glimpse that Matt has a few memories that were not taken from him. What a great night!!
I did 1 large pumpkin for the house and by then it was getting on 1:30am. I was tired and slipped up on the mouth.... *sigh*.
I white it out and show Matt my mistake. "Think you could help me with this?" I ask. "Oh, Okay." Matt replies looking sadly at my crescent-moon mouth all whited out. The paint was wet and neither of us could do anything until dry - so I say something about getting it tomorrow and off to bed I go.
Matt evidently had other plans. I awoke to a perfectly completed mouth on my giant minion. It wasn't an elf or a good fairy - it was Matt.... talented, empathetic, Matt - who felt bad for me and fixed the problem.
Looks wonderful, right?
The 2 on the left our mine, the 2 on the right are Matt's and the one in the center - the big one - was a combined effort.
October 11, 2014
Matt spends only one night at my house per week now... what a huge change from a year ago. The next day he gets up, plays a bit on guitar hero and then packs his bags and heads down the hall where he waits for me to hear him, knowing I will ask him if he wants to go home and in doing so will only need to reply in one word, "yes".
Matt speaks to me this way. He waiits for me to figure it all out, then ask and then he can reply. Matt can not initiate speech.
Earlier today we changed that ..... I think.
I was sitting at the computer reading an article and I hear the sounds - very light footsteps in the hallway, accompanied by the sound of roller-wheels (the kind on Matt's overnight bag). I wait. I don't look up, and I don't speak.
A few minutes later I hear the steps again -just a slight shuffle, and he stops again. Matt is waiting for me to turn around, read his intentions (his bag is packed and he's ready to go home), but again I don't turn.... I wait.
A few minutes later I hear the next small shuffle.....then he stops again.
"Matt? Are you trying to tell me you are ready to go?" I inquire, already knowing the answer.
Matt comes out to the bar where I am sitting, walking with sure, determined footsteps, and stands in front of me. "Uh, yes."
"Okay. But let's talk a minute first....."
I go on and explain to him that what he was doing was allowing his autism to take control, making him wonder if he should speak, would he be bothering me, trying to be cautious, making him afraid to initiate speech with me, his momma. I told him that I knew in my heart that he was not afraid of his momma... that he knows how to speak to me and that he knows I will listen, it's okay to interrupt me, no matter what I am doing, if he needs to tell me something. I said that when he felt unsure again, felt hesitant and wanting to wait, to try and remember that he need not ever fear conversation with me. . . . ever. I will always want to hear his voice and I will always stop to listen.
His reaction to this little bit of motherly advice was priceless. He lit up from head to toe - a light-bulb just went on - and a gigantic smile graced his beautiful face as he leaned in to hug me.
Something clicked - something big. Was it that his tentative pace in the hall, his waiting for me, his old routine of awaiting to be invited to speak, was acknowledged as his autism? Was it the realization that he could change that routine? Was it that he knew he didn't need to fear initiating speech with me? Has an old habit based in fear and routine been broken - or at least fractured?
I want to think so. The look - a very obvious "oh!" kind of look that signals when something has been understood with absolute clarity, is one a teacher constantly looks for in her students - this was one of THOSE looks, and I recognized it immediately.
I am so very anxious for next weekend now - to see if he just struts down the hall, straight over to me and comes right out and tells me he's ready to go.... what an awesome moment that will be.
Of course, it might not be that simple. Seems like nothing in autism ever is . . . but what if? What if next week, or soon after, he does initiate speech for that one little thing - ready to go home to his place. Matt is maturing in everything he does - and this maturing has sped up considerably since the move to his own apartment. Even if it doesn't happen next week I know it will happen soon - I know because I saw it on his face. It's starting to dawn on Matt that he can be in more control, if he pushes just a bit more, just a little harder, past that fear of initiating speech, he can do this.
He knows I'm in his corner cheering him on. He knows I guide, I suggest and I push a bit here, a bit there, but never hard. He is where he is because I do - and Matt knows this. He trusts me. And I know that look I saw tonight (which sent shivers right through me) was the start of something new, something wonderful, again.
Maybe he realized that his mom was right - that I would always turn to listen, always stop what I am doing to respect his voice, and he need never fear an interaction with me. Maybe it was the realization that he could fight his autism - the parts of his autism he doesn't like.
Will he ever be able to initiate with others? I'm not saying he will or won't - that's Matt's hurdles to jump and some hurdles he may not be able to cross, but I am hopeful - always, forever, hopeful. But maybe .... if he can do it with me, then there is always that hope that someday Matt will be able to initiate speech exactly when he wants to.....with whomever he wants to....and that would be ........
simply miraculous.
Initiated into the order of the
"HAND"
October 14, 2014
We were in the local Wal-mart. Matt goes his way to do his shopping and I go mine - to walk around aimlessly looking at things I don't need. Sometime later I am walking toward the area Matt loves most - videos, games and pictures. I see him a split second before he sees me. Matt immediately juts his arm over his head and waves enthusiastically. This means he found something he really likes.
As I approach his cart he reaches in and pulls out a t-shirt - minions with "Bee Doo, Bee Doo" on it and starts to laugh. I smile and as I'm telling him what a great find he has he begins to show me everything in his cart - every single thing - even each food item - and lastly picks up a small photo album and gleams. The presence of a photo album tells me he's getting pictures made.
"Are you getting some new photos made?" I inquire - knowing the answer. "Yes! Virginia Tech!" he replies. I am thinking, well of course they are.
He's in a great mood, has more shopping to do, so I wander off again.... and decide to call hippie hubby. "You should call Matt - he's in great mood!" I tell him, that's code for "Matt will speak today".
Tom calls Matt.
When I next see Matt we are at the front of the store and Matt is on the phone still talking to Tom. I smile - knowing how wonderful it is when Matt has something to say. I wait a second and then ask him which direction to go.....
Matt, still on the phone, gives me THE HAND. He extends his arm and throws up his hand in a "halt" gesture - which stays there as he continues to speak to Tom.
I got the THE HAND!!!
I'm am trying so very hard not to laugh out loud, so I turn and walk a few paces and giggle to myself. I find an open register and proceed through the tight passage as a cow through a chute... moving slowly. Matt comes up behind me, "I was talking to DADDY!" he exclaims, giving me the reason for the "halt" gesture.
"I know! That's why I gave you some privacy". I smiled. He smiled in return - knowing I had not been offended by his gesture and all was well.
Matt gave me THE HAND!!! Personally, I LOVED IT! What that simple gesture meant to me was that Matt felt secure enough in our relationship to do it, that his priorities matter over mine, and that he was in charge. What's to be offended by?
Yes, ladies and gentlemen, I am now among a select group of people who have gotten THE HAND - and I am very honored to be one of them. Woohoo!
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October 1, 2014
Survivor! Yep, tonight is Survivor night.... but there's been a glitch in the routine. Tom works tonight and I won't get home until after Survivor is over.... Matt will have to watch alone. He had to call Matt and break the news....
Sounds sad and depressing, and for my sweet son it was certainly disappointing news from daddy. Then I called him last night and said, "You know Matt, that means this is your first time to watch Survivor in your own home all by yourself..." - the happiness in my voice immediately got a positive response, "Yes!" he replied.
"That means we will have to watch again - how about Saturday at my house? Just don't tell me who gets voted off - because you are going to know, and I won't."
This thrilled him - ah yes, Matt will have prior knowledge, he will know what momma does not, and I heard his voice lift - the sounds of satisfaction?? Hmmm.
Matt is excited again - I could hear it in his voice and pictured him standing a bit straighter - that body language he uses when all is right with the world. Just because I only get to talk to him on the phone during the week does not mean I can't hear him - or I can't read him.
I find it so amazing the ease at which he can adjust a routine - knowing where we came from and that road we traveled for so many years. Now, here he is, taking it in stride, staying positive, adjusting to whatever comes... what an amazing young man he is.
I'm the one feeling the loss of this routine, trying to adjust to the fact that I have to wait all the way to Friday to see him. There are most definitely times when I think Matt does this "punt" thing better than I do.
I spoke with him again this morning and the happiness in his voice told me all I needed to know. When I asked him what his plans were for tonight he reinterated all the positive aspects of watching the show at his house, on his own. He then reminded me that Saturday we would have a "Survivor encore" - Ha! Love it!
So ladies and gentlemen, tonight is Survivor night, and Matt will watch alone - but that's not a sad thing now... nope, not at all. As for me? I will see him in my mind's eye, laughing, cheering and saying all the lines as he eats his pizza and feels in charge of his evening.... and that makes me smile.
Who will be voted out tonight? Not Matt and not me - we got this.
The day at the dentist
June 26, 2014
Today Matt used his alarm clock for the first time and was up and ready to go to the dentist when I arrived. At the dentist's office I mentioned the soon to be released book and that set the stage for a great conversation - interrupted every few minutes for teeth-cleaning. My hygienist mentioned that they see a lot of autistic kids now - none anywhere near Matt's severity, thank goodness - but they have noticed the increase in number. We chatted after every rinse - never got to do that before. I thoroughly enjoyed my visit today.
Meanwhile....
The dentist was checking Matt's teeth before mine - as usual - so that he can discuss his teeth with me. I was worried about Matt not brushing enough and getting a cavity in his partially erupted wisdom tooth - turns out that tooth is doing well. However, Matt's front teeth had a chip.....again..... what is Matt doing to chip his front teeth? We discussed possibly grinding his teeth - which I know he does - but to hurt a front tooth by grinding? Hmmm.... investigation time.
On our way out word had already spread about Matt's book and all the hygienists came to the front desk to see him. They asked for an autograph! *gasp* oh no - not the paparazzi!! I explained to Matt that an autograph was simply a signature.... they handed him a post-it note pad, all smiling and waiting to see, would he or wouldn't he.
Matt looked at the post-it note pad, picked up the pen and wrote out his name, neatly and precisely. He handed it to one of the ladies and they all looked about to swoon right then and there.
"You ladies are the first people to ever to get his autograph!" I said smiling. Oh the joy that filled that office... how wonderful for them to treat my son like such a star - I loved it!
On the way to shopping I asked Matt to please think about how he could have chipped his tooth. An hour later we are on our way back to his place and tells me he bumped it.
"Bumped it on what, Matt?"
He makes tossing gestures and then a argggg as if hit in the face and says "remote".
"So, you did something like an AFV moment, tossing the remote in the air, missed your catch and got smacked in the face?"
"Yes!" he stated laughing.....
So, mystery solved. He said he did it a few weeks ago - I never noticed the chip. I knew he had 1 chip already and I guess I just assumed it to be that old one. The dentist smoothed it out for him and all is well.
A mystery solved, the paparazzi contained, no cavities, and lots of smiles all around Matt, and let's not forget his first ever autograph - A perfectly wonderful day at the dentist office... how often does a parent of an autistic child ever get to state that?
August 14, 2014
Lots of people filled our home yesterday for my brother-in-law's birthday barBQ. Matt knew everyone except for a new friend, Dan, and he was happy to see everyone and meet someone new. Meeting a new person didn't seem to faze him.
Unfortunately, Matt can only handle interactions in short spurts so he would come out for a few moments and listen to conversation, then go back to his room. His room had air conditioning and Daffy Duck's Fantastic Island video - a definite plus. I went to his room and peeked around the corner of his door.
"Too hot outside?" I asked.
"Yes" he said in a sad almost guilty voice.
"That's Okay, Matt, you can just come out every now and then and see everyone. I do think you should invite grandma to see your room. Remember, she bought you that beautiful bedspread and she has never seen it on your bed."
"Oh!" His reaction told me he had forgotten that, and he was determined to correct it. He marched down the hallway and toward the back door. Grandma was sitting pretty close to the door - but Matt stopped. He looked at his grandma, then back to me, then back to her. Grandma didn't see him standing there as her back was turned.
"Do you need help?" I asked.
"Matt nodded and glanced again toward grandma. Initiating a conversation - even if it's just to ask a question - is painfully hard to do.
"Thelma, Matt has something he wants to ask you." I said.
Thelma turned to look at Matt and Matt asked her if she would like to see his room.
Easy-peasy.
"Yes, Matt, I certainly would." she replied and slowly got up. She was a bit stiff and moved a bit slow.....Matt walked slowly with his grandma, seeing that she had a bit of difficulty, and his posture was one that was "ready to catch" - I know, because it's the same posture he used with me after my back surgery a few years back.
I stayed in the kitchen - just letting Matt do his thing and show off his room. I waited and then wondered - 'does he need help in speaking to grandma?' hmmm... I walked down the hall and peered in. Matt was talking, Grandma was talking, no one needed my help. Actually, I felt bad for having even thought he would.... after all, this was GRANDMA! I turned and quickly headed back down the hall and let them be.
Matt would never have asked her to see his room if I had not suggested it. He would never have asked if I had not initiated the conversation for him. These tiny steps of guidance are just as important as big steps of independent living. Sometimes he can, sometimes he can't. When there is a crowd of people it is soooo much harder to do than when he is one-on -one.
Matt may have interacted 15 minutes of the 6 hours we had company. 15 minutes may seem so short - and in the overall scheme of things I guess it is, but each minute that he attended the party was was a minute more than he has in the past - and that's the big picture. Each minute was followed by time in his room in the comfort of his belongings - time to de-stress.
It was a great party and everyone had a good time.... everyone..... even Matt!
After everyone left we took Matt back to his place. He was anxious to get home and rushed us to get him there by pacing and packing the car and pacing some more - he NEEDED his home.
"Are you needing to get back to your place?" I said in jest as he paced. In a very serious tone Matt looked at me - "YES!"
I guess he loves his place! It's nice to know that Matt has found comfort in being in his apartment, surrounded by his things, with sounds of his choosing, and I am more and more relaxed dropping him off.
Matt - you have come a very long way, walked a very long path - to get to this point in time and I am so happy for you.
July 14, 2014
Last night's phone call had a surprise . . . .
I asked him about his trip to the store with Tom and about his plans for his evening....after a bit of discussion we had a period of silence. Then......wait for it........
"So, how's your day going?"
Matt asked ME that!!! Matt asked me!!!
28 years old and that was the first time ever that he asked me about my day!
Wow......... another step forward......
August 30, 2014
We hiked at Mt. Rogers today.... so let me tell you about it.....
When we finally arrived at the start of the trail we took a moment to look over the trail map. Listening Rock trail was 1.4 miles and rated "Difficult". It was highly suggested that hiking should be in groups of 3-5, and it warned of the vertical steepness of the trail.
This trail Matt was itching to do was rated hard because 1.2 of the 1.4 trail was steep - over rocks and tree roots and down the mountain to the overlook at Listening Rock and then a grueling vertical climb back up. We are talking steep.....very steep. * sigh*.
"Matt, we have to go slow. My knees might not like this very much. Do you remember that I had to have surgery on both my knees?" yea, I was going for the sympathy card. Secretly I was thinking, Please Matt, pick a different one or keep the pace slow, please, please, please! Matt being the ornery little cuss that he is when it comes to hiking, gave me a sad "poor you" face, turned and proceeded with the hike. Basically, 'Suck it up mom, cause I'm going with or without you'......geez....So much for sympathy...
A few steps down the rocks however, he turned and extended his hand toward me - he would help me if I needed. He would catch me if I fall...... he really did care..... "Naw, Matt, that's okay... I have my hiking stick and so far so good... just keep the pace slow." I said. "Oh, okay!" he replied smiling and turned once more to lead the way.
We talked a bit - not much though. We stopped and took photos and remarked about how quiet it was and green - so very green - and we just kept going, down, down, down.
Then.... there it was. A massive boulder which jutted out into space and so high that we gasped at the sheer beauty of what we were seeing. Ridge after ridge in marvelous blue hues. "That's North Carolina." Matt said. Yep, we were looking into the mountains of another state. We took turns taking pictures and looking out over the vastness of that valley and then.....
3 minutes of rest and it was time to get going again. Time to really challenge those knees ....
We followed the trail as it winded this way and that, past boulder after boulder, every step an upward climb. We stopped at a few boulders to grab a drink and take a picture and I suggested Matt breathe using purse breathing to keep from getting exhausted, which he did. Still he walked slower, his left hand grabbing his back and breathing hard. "Does your back hurt?" I asked. "No, just tired... " he replied, but he kept moving, kept putting one foot in front of the other, determined to get to the top.
Not far from the top we began hearing vehicular traffic, and Matt turned and smiled, "The road!" Not too much farther.....thank God!
As we rounded another bend we came across a young couple in their early 20s, laid out flat on the rock, their shoes and socks off, resting. It may be a bit silly, but I loved that.... we were still moving, (me 55 years old and 40 pounds over weight) and still climbing, and doing better than that couple 30 years younger... *snicker, snicker*
When we reached the top we found ourselves at Buzzard's Overlook - a beautiful place we have been to many times before. After pictures of triumph we headed toward the Jeep..... both of us walking a bit faster now, both of us with smiles on our faces and feeling like we had conquered the world.
I slid in behind the wheel...Matt slid into the co-pilot's seat.... we looked at each other and suddenly both raised our hands and high-fived hard and loud, with a "YES!".... at exactly the same time. A perfectly timed celebration to end a perfect hike on a difficult trail.
Matt pushed me today to do more than I thought I could..... it seems the roles were reversed and we each took up our new role as if it were ingrained. Matt: the leader, the coach, the motivator...... and me: the Mom, the one who knows she can do this difficult trail because her coach's faith never faltered.... just needed a steady gentle push to keep me focused.
We make a great team, my wonderful son and I.
.... always have, and always will.
September 7, 2014
I took Matt back to his place this evening. As we were riding and singing to the radio, Matt suddenly stops singing. He looks at me - really looks at me and says, "I love you." To accentuate the thought he uses his karate-chop motion.... both hands.
"Awww... I love you too, Matt!" I said almost in tears. Matt smiles and replies, "We are best friends FOREVER!"
Yes, we are.
For those that don't know, Matt rarely ever says "I love you" first. This was only the second time in his entire life.....
The first time he said it he was trying to apologize for something, trying to make me smile again, and was many. many, many years ago. I remember him saying it, remember smiling, but can't remember exactly what had happened... I guess that part wasn't important in the least at the time.
And that was the only time he had ever initiated that beautiful phrase. Tonight... tonight it came from the heart unprovoked and just because.....the best kind ever.
Now you can see why I had to hold back tears. And that BFF statement was the cherry on top! Tears are flowing just fine now... thanks.
June 3, 2014
Matt is my YODA!
It was a long day yesterday. I ran from 4am on and in the afternoon I took Matt to get his hair trimmed, shop a bit and then get pizza. I was worn out, ready for a nap. As we drive back to his apartment I asked him if it was OK if I just dropped him off - instead of walking him to the door and going in and then saying goodbye as usual. His face lit up. I smiled, "Dropping off or picking up?" (a line from Ghostbusters) and he laughed. As we pulled into his apartment complex he looked over at me and gleefully announced, "Just dropping off!" So I pulled up to his door and he hopped out of the Jeep as if he was on cloud 9. The ladies next door were sitting out on their front stoop and Matt turned toward them, flashed a HUGE smile and waved, glanced my direction and did the same. He opened his front door and again turned toward me, gave me a huge wave and smile and gleefully said, "Bye!".
Such a small thing, walking to your own door all by yourself. No one over your shoulder, no one waiting for you to get out your keys. You walk to your door, open it and step in - all on your own and you never think twice about it... at least I didn't until I saw Matt's reaction to that simple independent act.
Now I know. I know that I don't need to walk him to his door. I don't need to carry anything in or wait to get a hug before I leave. I can just pull up, get that hug while in my Jeep, and say my good byes. No need to walk him to his door - which has been just habit up until now. His reaction, his immense joy at walking his path and opening his door alone schooled me a bit about the simple joy of doing such things by one's self.
Do you remember your first place? Do you remember that simple act and the feeling of empowerment that it brought? I had forgotten it until I saw it in Matt yesterday. Then it hit me and I remembered my own first place, the feel of my own key in the door, stepping into my own place. I get it.
Matt reminds me of how it all felt to be newly independent and you can bet that I will be dropping him off more from now on. What a masterful teacher - so subtle in his lessons. Matt is my Yoda.
June 2, 2014
200 Days – and going strong
It’s been over 200 days since Matt moved to his own place. In that time the progress has been in giant leaps and bounds and I am convinced it’s because he is happy – as in pure joy happy. Matt is 28 years old, moderate to severely autistic and mostly non-verbal. He wasn’t supposed to be able to do all he has done in his life. He wasn’t supposed to, according to the team of doctors that examined and tested him for a week when he was just 2 years old. They recommended institutionalizing him right then and there and actually warned me of how difficult life would be when I said I would be taking him home. Autism was rare back then (1: 10,000) and services were basically non-existent. That was then… and look at him now.
Matt stays at his apartment 6 out of 7 days each week. I go over only 2 times during that stretch – to take him for pizza or groceries or just hang-out. He spends his time alone with his hobbies and he cooks and he cleans and he maintains his special place – his sanctuary from the mainstream world – that he earned through the many years of practicing how to be independent and responsible. Although he is alone he doesn’t consider it as bad thing, as he prefers his time to himself. It allows his mind to work and his creativity to flow. Matt sees other people as enigmas wrapped in a riddle, and shrouded in mystery. Time to himself provides the relief from the fear of strangers, the uncomfortable feel of their presence, and the confusion of their speech. I ask him, “Are you lonely, Matt?” and he looks at me and smiles his biggest grin, replying, “No!”
So here we are, 200 days into his independence and I look back at all he is capable of doing since. He walks to stores and purchases what he wants (CDs and books) and what he needs (food and clothes), and he is careful not to spend too much. He orders his own pizza. He walks his neighborhood and smiles and waves at his elderly neighbors. Sometimes, he even says “Hi”. He does his own laundry and neatly folds his clothes or hangs them up. He keeps his dishes washed, his floor vacuumed, and his bed made. He takes a shower every other day. He tries very hard to remember to brush his teeth, but that one is still difficult for him. I remind him as often as I can. He can do all these things because he had practiced. Preparing for independence and the move to his apartment, took over 10 years. One has to be seriously committed to the journey.
Matt is interested in several activities, eager to go on hikes with me or spend time on adventures to his favorite historical sites or various college campuses. He’s comfortable with me – because he can be exactly who is with me. I teach and I listen. I laugh and can go for long periods just silently enjoying his presence. Our silence is as comfortable as our interactions. I know his non-verbal language. He knows my speech and gestures. Together we share a unique communication that passes between us smoothly, effortlessly.
His confidence is at an all-time high right now. As we take the next step he is eager to show me that he can do it- all by himself - and I am joyful for him, even when my heart fears the worst. My doubts are always short lived though, because this is Matt after all, and Matt rises to the challenges before him as if each and every one of them would define him. For Matt, failure is not an option. It’s been a part of his personality – that desire to do it and to do it right - since he was a young child. That longing to be perfect has served him well in his quest toward independence.
I keep in contact with him as he stretches those wings of freedom. Matt calls me 3 times a day – everyday. In the morning before I go to work, afternoon when I get home and in the evening before I go to bed. He calls when he goes for a walk and he calls when he gets home. These calls are our lifeline. I know he is OK, I know when something is bothering him or when he has a question. I have to extract it – each little piece of information, because he can’t fully offer up the words without help. It’s a process that has taken us years to perfect and we are still fine tuning it from time to time.
My son’s success is also helping others, showing those who would doubt that an autistic young man with his level of severity could attempt independence that it really is possible . . . that it can be achieved. So while I am working with him to be all he can be, Matt is inspiring others to attempt the same thing – individual freedom. Freedom doesn’t come easy for a handicapped individual. It is hard fought for and hard won. But it’s possible. It takes time and an overpowering desire to see your child reach their goals and step into their full potential. It’s possible. Hopes and dreams can be realized.
And the joy from the adventure, from watching a child rise to all those challenges life hands out, has been felt by both of us. Matt is not the only one feeling the power of pure joy.
May 27, 2014
A few days ago I was chatting with Matt via phone and asked him, "Have you gone for any walks lately?"
Now, that might not seem like a big deal. It may sound like a normal question - but it wasn't. Matt knew that we had practiced walking his neighborhood, walking to various stores and knew the routes. The deal was he was supposed to call me when he left and call me when he returned - it's a safety thing. I need to know if he is attempting these things. Knowing his desire to do all things as an independent adult and knowing he was anxious to try it, my question was to find out if he was walking - without letting me know, without the safety calls.
"Um, yes." he replied. "I went to the pharmacy store a few days ago and I went to Food Lion yesterday."
and....my heart stopped. Matt had been out in the big bad world without notifying a soul. He had walked to the pharmacy and used a VISA gift card. He was unfamiliar with it and the lady at the register helped him. He bought a VT t-shirt at K-mart and the line at the checkout was very long and slow. A young man working at the jewelry counter took him over to his station and checked him out there so he would not have to wait. He told me all of this.
The pharmacy was a big deal - as we had not gone there yet. It was a new place with new faces. He allowed a perfect stranger to help him. The adventure at K-mart was important because the young man he referred to was the same one we had talked to before. He knew Matt had autism and helped him as soon as he saw him. Both were great adventures, but he never called before hand or after he returned. He never said a word about either until I asked him specifically.... so we had a talk.... a very long talk.
I told him I was proud of him for doing these things and also explained how he knew to call me and didn't. I again explained what could happen if I called him and he didn't answer his phone. He looked sad and guilty. I reinforced how proud I was of him for going. The only thing missing were the calls.
After our discussion I knew Matt would call me the next time and sure enough, yesterday Matt went for a walk to K-mart again. He called me before he left and called me when he got back and I showered him with praise repeatedly.
These new things are a wonderful step forward for Matt and a scarey time for me as I know how big and bad the world can be. I refuse to scare him, just teach him responsibility and skills to do what any independent young person can do. He is greeting cashiers now and he is allowing people to help him that he doesn't know - but we all know there are those out there that would take advantage of his innocence - thus the need for calls. Matt knows there are evil people, he knows there are dangers, he knows . . because we have discussed these things his whole life - but I don't wish to harp on them.... not right now anyway.
Matt is doing well - his mom is proud - but also a wreck.
May the good Lord watch out for my son and walk with him on all his adventures into the world. May I keep the faith that he will be fine. . . all by himself.
May 23, 2014
Today is Friday - and we are NOT doing Friday night pizza and a movie. Matt is having his first ever Friday on his own (his idea... mostly...) and now Saturday will be pizza and a movie night - this week's movie? Pompeii.
This change is a way of showing Matt that he can do any day with any schedule. Since we have always had Friday as a scheduled day for a particular routine I suggested it as the day to change.
What's really cool about the idea is that Matt was very excited in trying it. imagine... a Friday.... at home.... doing what ever you wish..... Yep, this kid definitely has my genes!
Saturday he will spend the night, Sunday off to hike the NR trail and then back to his place.
The new routine, the number of days alone, I am always amazed at the ease in which he adjusts. He handles these little obstacles like they were nothing. Just yesterday we went to Foodlion to get his groceries - same cashier was there again and waved at him when we walked in. Matt smiled!
After locating his regular 8 items, he went to her register. I went to a different one. He not only used his food card with no problem, he also spoke to the cashier and smiled. When I went to meet him after paying for my own, she looked at me and smiled, "He's doing great!" I smiled and nodded. Matt, having heard her remark, turned and smiled at her and said, "Yes, I am".
All of these days of practice doing this or that, year after year, show that as he gets more comfortable he learns more interaction techniques and it's obvious now that he really enjoys the learning journey.
I have loved our long journey too..... I'll update again soon.
May 13, 2014
Looks like it's time to once again change the schedule. Matt wants to move to 6 nights / week with only 1 day at my house. Before you go wondering how momma will handle such a schedule let me fill you in on the details....
Matt will have 1 day he reserves as "company" day - and that day (Tuesday I think) will be the grocery day and shopping day and get organized day for the week. Any plans with going out with family will be reserved for that day. Friday will remain pizza and a movie with momma (yea!!!) and Saturday he will go back to his place.
Matt will be walking to stores from his apartment .... alone .... and in doing so, will be spreading those wings of freedom. It will be a phone-linking type of situation as when he leaves his apartment he calls me. He calls me again when he gets home and then we will talk about any problems he perceived.
This is where it gets tricky. Matt looks to me to see how to reply and I won't be there... he will have to figure out replies and answers to questions all on his own.
We wouldn't do this if he had not been practicing. So... now it's time to test the wings, again. Each new thing he does is a bit nerve wracking for me - but I am the one pushing.... it's a mom thing.
Am I scared ? Hell yes!!! Will we be doing this anyway? Hell yes!!! Matt faces his fears everyday, he works through some very emotionally frightening situations...so I will take a lesson from my courageous son and face my fears. I will send my sweet son into the world alone, for an hour here and an hour there, and I will hold my breath and tap my feet and stare at my phone and wait... wait for it to ring, for the sound of his voice as he excitedly tells me he is home again.... and then I will breathe, and in my next sentence, encourage him to do it again.
This all starts this weekend.... fingers crossed. I wish I smoked or drank... it's times like these that scream "crutch needed!"
May 6, 2014
When I talk to Matt on the phone at night I send him kisses - via kissy noises and then state "ha! I got you!". The past few nights after we talked I have not done that, no reason, just forgot. Our goodbyes have been a simple, "I love you".
Evidently Matt misses those silly kissy noises because in speaking with him on the phone last night he all of a sudden made kissy noises, giggled and said, "HA! I got YOU!" I threw kisses right back. It became a kissing war......
It's funny, what we find endearing... kissy noises..... yep, he got me alright...... right in the heart.....
April 24, 2014
With all that happened with the schematic and the MP3 I forgot to tell you all about the other cool thing that happened last night. As we pulled into the apartment complex we noticed 3 elderly neighbors sitting outside and watching us pull in. We had met them the day before. I told Matt they they were waiting to say "hi" and asked him to please say "Hi ladies" as he exited the jeep. Matt not only said "Hi Ladies!", but he did it with gusto and waved. As we got to his apartment door I heard one of the ladies tell the other 2, "He waved at ME!!"... Aww.....Sweet.
April 23, 2014
And the OMGs just keep coming – as today Matt surprised me again. He opened the door and after our exchange of ‘hello’ went to finish getting ready to go. As I waited in his living room I noticed a new diagram / cartoon on his coffee table. Matt doesn’t leave his precious drawings out for the world to see – so this was meant for me… I knew it. I was going to pick it up, but then decided not to – maybe he wanted to hand it to me himself - and instead went to help him make his bed. As he prepped to leave he grabbed his headphones with his new MP3 player attached.
“Does it have music on it?” I queried. After all, he had just gotten it the night before and Tom was going to put music on it on Thursday… which left me confused.
“Yes” he said grinning.
Something was up.
“Really? Did it come with music, Matt?”
“No, I did it all by myself!” stated with such an enormous amount of pride in his voice.
He was standing straight and tall, smiling and excited – and this meant he had done something new and had been successful… I waited as he went to the living room where he retrieved the drawing and brought it to me. It was not a cartoon exactly and not a schematic, but actually a mix of both, on how to transfer his music to his new MP3 player from CDs.
“Did it come with directions?” I asked – sure that it must have, but his response was a resounding “no”. “How did you learn to do this?” I said trying to dig just a bit deeper as my mind did not grasp what was right in front of my eyes.
“I figured it out myself”. Yes he did. Matt had figured out how to transfer his music and had spent all the previous night doing exactly that.
He had given me hints – hints that didn’t come clear until I held the paper in my hand.
1. There’s that way he has about showing me something important, getting close, almost a whisper to his excited voice, and this is how he was last night when he open his MP3 player and hurriedly showed me how to run it, the menu, the earphone plug and made it a special point to point out the USB port, commenting, “And here’s the little bitty USB!!”. I should have known, I really should have, but I didn’t.
2. The after I got home he called to tell me he was listening to music. It never occurred to me it was on his new MP3.
3. Then again, this morning’s call found him still listening to music, and excitedly so.
I usually know these signs. I usually see them and go on the hunt for the underlying message – but I missed these. Maybe I was just tired (exhausted is closer to the truth). Maybe. But nevertheless, I missed the signs and signals and so today, when hit with the schematic and the music loaded I was ill prepared for the enormity of it. Matt didn’t make that schematic for himself…. He made it for me, because words are difficult, and pictures are worth a thousand of them anyway, he just drew a picture to explain the whole thing.
Now the really big part – my own astonishment that he could do this task on his own without guidance. Matt is very bright – I know this. So why was I so surprised at his ingenious way of demonstrating his capabilities? Is there something inside me that still feels he is more helpless than I know him to be? Have I slipped into a stereotyped version of autism that suggests that one must also have a lower IQ is they can’t communicate? This is what really hit me hard because quite frankly I thought I was past that stuff – way past that stuff. So, knowing my son is very intelligent but communication challenged, why was I so surprised at his doing this one thing all by himself?
I told Matt that he was brilliant, my youngest genius, and then I apologized to him for ever having any doubts, for being surprised at his abilities and then I thanked him for teaching me to be a better person. For teaching me that although I fight against the stereotypes constantly I was unaware that I still harbor a few myself and must work on ridding these from my unconscious thought.
“Matt, you open my eyes, you put a mirror in front of me so I can see the reflection that you see. I do see you for the intelligent young man you are – I really do. I see it because you taught me how to see it. You are the best teacher ever.”
Thank you, Matt. You keep me seeing what I need to see, show me what I have yet to learn, and astound me on a daily basis – and I love you for it.
April 11, 2014
On Tuesday I went to Matt's, picked him up and took him shopping for groceries. Matt didn't speak much on the way, shopped alone at the store, and didn't say much on the way back. I helped him in with his groceries and asked him if he wanted me to hang out a while - the answer was no.
Now, I was having a weak day and the lack of interaction was getting to me. As I said good bye at the door I teared up a little, a few tears escaped and I left thinking, "Damn it, I wish I hadn't let him see me cry." That night I got a phone call.
Me: "Hi Matt".
Matt: "Oh, .... I was worried!"
Me: "Why?"
Matt: "Because you were sad."
I assured him I was fine, but when I went over on Wed we talked about it. I told him he hurt my feelings to be just a chauffeur - just his driver. As we spoke, he sat forward, listening intently.
Matt: "Oh, I know! On Tuesdays we will shop together and you should stay a little while after you help me put my groceries away!"
Me: "That's a great idea!"
Where I had felt bad about him seeing my tears I now see that it was the best thing that could've happened. Matt has a hard time figuring out the social aspects of communication. Having him see that certain actions can hurt he thought about it and figured out how to be more concerned about those that spend time with him. He is a great guy, seems happy all the time, and he tends to blow people off as unimportant at times - something he doesn't realize he is doing. Now we have actually talked about it he may look a little deeper and try to socialize a bit more. Living on his own does not mean he gets to be self-absorbed, and he sees that now. I am looking forward to Tuesday to see if he follows through.....
April 5, 2014
Matt is initiating conversation more, and his speech is better. This is not only my observation, but Tom's as well. With the confidence he has in himself he is growing in ability - from cooking, and branching out on new activities, to speech. Matt has always had a road-block in his speech with half or more of each phrase being "dabba, dabba, dabba" as he tries to form the next set of words. The "dabba, dabbas" are getting fewer. He clears his throat when he starts to get to that point, takes a breath, and tries the sentence again. This is not something somebody taught him - but his own way to break the cycle. How cool is that?
Matt talks more, and we are now blessed with even an occasional, real, back-and-forth conversation - which being a newbie at this, always throws me off a bit. I find myself getting addicted to his voice. I want more. I want to know him as best I can and when he shares a thought with me it's like Christmas has come again.
Parents often times think that once their child is grown into a young adult (17,18 . . . 22) that they are where they will be in their ability for the rest of their life. I am putting a nail into the coffin of that one. It's just another autism myth that must be broken. Learning continues . . . and I suspect for my own son, that it will continue on for his entire life. What will Matt be like next year? Or in a decade from now, near 40 years old? I can only hope that he will continue on his own path, seeking to overcome the things he wishes to change about himself and that his self confidence continues to rise. There's no telling just what he can do . . ever.
Meanwhile, I am enjoying the sound of his voice and a glimpse into his thoughts - a little more with each passing day. From silence at 2 years old, to a word here in there at 5 years old, to a sentence a day at 10 years old, to a few sentences a day at 17 years old, to several in a row at 22 years old, to several sentences, more than once a day at 25 years old, to a real conversation - short, but real at 28 years old..... Matt, oh my amazing sweet child, thank you for giving me the opportunity to get to know you a little better every year.
April 4, 2014
The transition continues as Matt's schedule changes this weekend to 5 days a week, Sun - Thurs. I get to start having him home on Friday and Saturday!! Tuesdays are scheduled for shopping and Wed - "Survivor" at Matt's place!! Woohoo! The schedule is anticipated positively by all parties - including Mr. Awesome. It also helps with my schedule, and with the spring warm weather goal of walking the neighborhood to meet his new neighbors. The neighbors have been anxiously waiting.... it's not everyday they get to meet a "famous" guy (his newspaper pictures is posted in the office). Let the next step begin!!
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