Last weekend Todd and I took Matthew to Medford to meet with our friends at the REACH Family Institute. That four hour drive about kills Todd and I....we are "sky trippers" as opposed to road trippers. Talk about wimps. Well, Matthew is quite the little road warrior and did amazingly well on our drive. He has discovered his lungs and, much to our ABSOLUTELY JOY, points to things in his surroundings now and labels them (at top volume....repeatedly...over and over until you acknowledge). So we hear "truck" and "sign" and "house" and "plane" and "car", etc. and are sooo grateful for the indication that his awareness of the world around him is starting to kick in. The best part (and the worst part if you are trying to carry on any semblance of a conversation) is that he is determined to communicate and will literally increase in volume each second you delay sharing his attention to the object he is pointing out. It is so dang cute! And it warms my Mother-heart. When we first started making these trips to Medford, Matthew had, maybe, 15 words and only used a select few spontaneously. This truly represents a miracle.
In our efforts to entertain Matthew, we let him pick a movie. Normally I just show educational stuff in the car--letters, numbers, signing--but we let him watching Mickey Mouse (lasted 4 minutes before he was bored), Toy Story (lasted maybe 15) and a couple of others. Finally, I put the most boring letter video you can imagine in and Matthew was riveted. The most amazing part is this--he started to say EVERY letter before the video would say it!!!! Todd and I were blown away after a, b, and c, but when he fudged for the first time on letter Q, we were jumping for joy! He ended up getting about 24 letters correct! Anyone who has known Matthew for any period of time realizes what an incredible thing this is. We are SO proud.
Now, as great as all of those things are, there is a piece of this puzzle that is falling to place that makes me want to weep with joy. Matthew is starting to really love us. He isn't saying those words yet (but I know they are coming), but he is hugging...and not just little hugs. He turns to me numerous times a day, throws out his arms, and asks for "hug? hug?" And he proceeds to give full-body, wrap-your-legs-around-the-other-person squeezes with a big ol' smile on his cute little face. Some of his hugs are now avoidance hugs--he asks for a hug to get out of doing work or to get closer to my earring that he wants to rip out, or to reach something that is too tall for him, but I vote that those creative, manipulative hugs are an indication of intelligence and resourcefulness.
Todd and I have always loved Matthew. He is our son and we are privileged to have this special spirit entrusted to us. But we now LIKE him as well. "Horrible mother!" you might be thinking in your mind. I promise you that if you were to walk a mile in our shoes over the course of the last few years, you would shed that criticism in favor of compassion. Not that we need pity or anything...just that we have had a bit of a rough year as we have been dealing with phase after blasted phase of behavioral challenges, aggression, biting, impulsivity, total oblivion to others, poop (ah, the poop issues), and other fun adventures. And though some of those things haven't disappeared and are still a daily trial, the rewards are so much richer because Matthew can, through his hugs, tell me he loves me.
I got a note from Matthew's kindergarten teacher today as well...she said this: "Just wanted to let you know that Matthew had such an awesome day! He was using SO MUCH language and putting two words together. When he came into my room he checked scheduled, went straight to circle and said “pick fish, song fish, pick fish.” I reminded him to sit down and he sat and clapped his hands (which right now is his way of raising his hand-working on it to get all the way up in the air) and he was the first to pick his song. He was also making a lot more eye contact and seemed very connected with the daily activities." Luckily, we are seeing lots of the same--rich eye contact, more connection, using multiple words together. I could not me prouder of my little dude!!!
I'm singing with you Matthew!!!!
Monday, September 30, 2013
Thursday, August 29, 2013
Heart on my sleeve
I really want to write about something positive and uplifting, but I feel instead to be completely open about how I'm feeling in hopes that I will appreciate the good days even more as I reflect on the fact that I've come through some pretty tough ones.
Unlike the majority of my hard days, this one has nothing to do with poop. Perhaps I should be relieved, but poop can be cleaned up in a matter of minutes (I've gotten to be pretty efficient--me, a pair of gloves and some Lysol) and I have a feeling this is something I might struggle with off and on for years.
There are a few things I feel that I don't think I should.....or at least wish I didn't. Let me explain.
I feel jealous. Lately I have really struggled as I have looked at the lives of my friends and even other family members and realize what things could be like if Matthew didn't have autism (and the list of other diagnoses). I know that we are blessed by our sweet boy--that he is a gift in our lives....but there are days when I know his gift is to teach me patience and I don't want to learn it. And there are days when I know he was sent to me to teach me not to be critical or judgmental and I just plain don't care. I am SO exhausted by my life and wish I had the option of going places with my three children by myself without running the risk of getting literally stuck somewhere because I am physically incapable of carrying my 50 lb screaming child back to the car when he is overstimulated and loses it. I wish I could get on an airplane and not get physically ill as I anticipate what could happen on the flight...or what will likely happen the first night when he doesn't sleep and keeps everyone up. I envy the families around me that have what I envisioned for my life.
I feel scared. There are days when I literally wake up nervous because I don't know what I'm going to do to keep Matthew "busy" that day. If I don't have every hour scheduled, I get anxious because his unstructured time is literally dangerous...those are the times he gets most out of control. I am afraid that he is my child...and I don't know what to do with him. And if I think about the things I could possibly do with Matthew that might be productive and helpful to him, I have two other children which are likely to sabotage because they are desperate for my attention as well. I am also scared of what I might do when I get frustrated with my kids. I'm scared I will yell more than I should and push the other two away because my discouragement with Matthew sometimes comes out sideways at them.
I feel overwhelmed. I feel like I am constantly making decisions, prioritizing medical and therapeutic care, and receiving information from a thousand well-intending friends and professionals. I am at the point now where I almost don't know what is and isn't working, what we have and haven't tried, what our next step should be and I'm too scared to abandon anything that could possibly be contributing to any of the progress we have seen over the course of the last 9 months. I'm sick of being gluten free, caisen free, worrying about fiber and raw/organic this and that. I'm exhausted at the thought of planning my grocery shopping and knowing that I need to go to three stores to get all of the specialty foods and herbs and supplements that we will need to get through the next week.
I feel less-than. I watch other Mom's who do so much for their children and find such joy in motherhood and feel like I am less than I should be as a mother. Other mom's parent children with special needs and do it with such grace...why can't I?
I feel tired. I think that is the crux of it all because when I am tired, I have a difficult time keeping perspective.
NOW....all of that being said, let me tell you what I believe.
I believe that if I allow myself to become a product of my comparisons, I will never measure up. Our family is not and will never be like other families because our family is special. Imperfect, exciting, challenging, but oh so special.
I believe faith can conquer fear. I have been trying to listen more to what I am supposed to be learning each day because I recognize I don't have all the answers. Rather than live in my fear, I am trying so hard to be full of faith and, though my prayers feel a bit redundant at times ("please give me strength beyond my own so that I don't lose it on my children today"), they aren't bouncing off the ceiling. I am changing as a person because being full of faith requires deep, deep humility and I promise you that I have never felt more humble, more teachable, more open or more desperate.
I believe we can sometimes see simplicity on the far side of complexity. In the midst of my million decisions, there is a simple truth and that is that I'm raising a child of God. He is mine for now and I know that, in the quiet moments when I consider who he is, I can be given glimpses of the divinity that lies within him and realize that he is powerful in his own way...that Matthew has a mission here on this earth and whether he does 8 or 10 hours of ABA or sees a functional neurologist or cranial osteopath, he will still accomplish that mission.
I believe I am more-than enough if I am trying my best. GIving in to less-than will become a self-fulfilling prophecy and I can't afford that.
So though it is OK to feel how I feel and I'd be lying if I said that I can always see what I believe clearly through the density and intensity of some of those feelings. But I guess I still have the responsibility to rise above it. I know that I am surrounded by people who are cheering me on and that, above all the good advice in the world, sustains me on the hardest days. For now, I think I'll just go to bed and hope that my children take mercy on me tomorrow :-)
Unlike the majority of my hard days, this one has nothing to do with poop. Perhaps I should be relieved, but poop can be cleaned up in a matter of minutes (I've gotten to be pretty efficient--me, a pair of gloves and some Lysol) and I have a feeling this is something I might struggle with off and on for years.
There are a few things I feel that I don't think I should.....or at least wish I didn't. Let me explain.
I feel jealous. Lately I have really struggled as I have looked at the lives of my friends and even other family members and realize what things could be like if Matthew didn't have autism (and the list of other diagnoses). I know that we are blessed by our sweet boy--that he is a gift in our lives....but there are days when I know his gift is to teach me patience and I don't want to learn it. And there are days when I know he was sent to me to teach me not to be critical or judgmental and I just plain don't care. I am SO exhausted by my life and wish I had the option of going places with my three children by myself without running the risk of getting literally stuck somewhere because I am physically incapable of carrying my 50 lb screaming child back to the car when he is overstimulated and loses it. I wish I could get on an airplane and not get physically ill as I anticipate what could happen on the flight...or what will likely happen the first night when he doesn't sleep and keeps everyone up. I envy the families around me that have what I envisioned for my life.
I feel scared. There are days when I literally wake up nervous because I don't know what I'm going to do to keep Matthew "busy" that day. If I don't have every hour scheduled, I get anxious because his unstructured time is literally dangerous...those are the times he gets most out of control. I am afraid that he is my child...and I don't know what to do with him. And if I think about the things I could possibly do with Matthew that might be productive and helpful to him, I have two other children which are likely to sabotage because they are desperate for my attention as well. I am also scared of what I might do when I get frustrated with my kids. I'm scared I will yell more than I should and push the other two away because my discouragement with Matthew sometimes comes out sideways at them.
I feel overwhelmed. I feel like I am constantly making decisions, prioritizing medical and therapeutic care, and receiving information from a thousand well-intending friends and professionals. I am at the point now where I almost don't know what is and isn't working, what we have and haven't tried, what our next step should be and I'm too scared to abandon anything that could possibly be contributing to any of the progress we have seen over the course of the last 9 months. I'm sick of being gluten free, caisen free, worrying about fiber and raw/organic this and that. I'm exhausted at the thought of planning my grocery shopping and knowing that I need to go to three stores to get all of the specialty foods and herbs and supplements that we will need to get through the next week.
I feel less-than. I watch other Mom's who do so much for their children and find such joy in motherhood and feel like I am less than I should be as a mother. Other mom's parent children with special needs and do it with such grace...why can't I?
I feel tired. I think that is the crux of it all because when I am tired, I have a difficult time keeping perspective.
NOW....all of that being said, let me tell you what I believe.
I believe that if I allow myself to become a product of my comparisons, I will never measure up. Our family is not and will never be like other families because our family is special. Imperfect, exciting, challenging, but oh so special.
I believe faith can conquer fear. I have been trying to listen more to what I am supposed to be learning each day because I recognize I don't have all the answers. Rather than live in my fear, I am trying so hard to be full of faith and, though my prayers feel a bit redundant at times ("please give me strength beyond my own so that I don't lose it on my children today"), they aren't bouncing off the ceiling. I am changing as a person because being full of faith requires deep, deep humility and I promise you that I have never felt more humble, more teachable, more open or more desperate.
I believe we can sometimes see simplicity on the far side of complexity. In the midst of my million decisions, there is a simple truth and that is that I'm raising a child of God. He is mine for now and I know that, in the quiet moments when I consider who he is, I can be given glimpses of the divinity that lies within him and realize that he is powerful in his own way...that Matthew has a mission here on this earth and whether he does 8 or 10 hours of ABA or sees a functional neurologist or cranial osteopath, he will still accomplish that mission.
I believe I am more-than enough if I am trying my best. GIving in to less-than will become a self-fulfilling prophecy and I can't afford that.
So though it is OK to feel how I feel and I'd be lying if I said that I can always see what I believe clearly through the density and intensity of some of those feelings. But I guess I still have the responsibility to rise above it. I know that I am surrounded by people who are cheering me on and that, above all the good advice in the world, sustains me on the hardest days. For now, I think I'll just go to bed and hope that my children take mercy on me tomorrow :-)
Wednesday, July 24, 2013
Eyes Wide Open
There are about 15 different directions I could take a post with this title. It could be about doing my best to never blink because if my eyes are closed for millionth of a second, Matthew seems to be getting into trouble these days (he's one of the most skilled pick-pocketers you will ever meet, can snatch a phone from a magician, and runs fast enough now to require me to actually exert substantial effort to catch him). But it isn't about that, though it would be an entertaining post. Instead, I want to focus on two very different ways in which I feel keeping our eyes wide open helps bless our lives and the lives of others.
Soooo, Sunday was rough. Todd had been out of town since the previous Monday, arriving home late Saturday night completely thrashed from a grueling hike with the scouts. I was impressed--a group of 14-16 year old boys climbed St. Helens, walked 30+ miles along the Pacific Crest trail to Mt. Adams, and then summited that challenging beast. When Todd got home, I expected thrashed, but the worst part was his nasty feet--he could hardly walk. I put him to bed and, determined to be a good wife, bandaged his bloody, blistery stumps while he snoozed as exhaustion had completely overcome him. Yes, you should be impressed I did that. True love. The next morning, he slept in a little and, because of the pain in said "stumps," he had a hard time walking and didn't make it to the first part of church. As many a mother can attest, when you've been bearing the full load for an extended period of time (and yes, don't mock, but a week feels extended to me), you can only keep it together for so long. And I had done an awesome job of keeping it together (patting myself on the back right now). BUT, come Sunday, I was pretty tired and ready for the hubs to pick up some of the emotional slack, if nothing else. He couldn't. I completely understood and did my best to rise to the occasion--got kids all ready for church and fed before 8:30 because I had to be there early for choir practice (I'm the choir pianist). We made it....late.
So church starts and I'm single-Mom-in' it towards the back of the chapel. There are lots of visitors and Matthew immediately starts to try to chat it up with those in front of us (visitors). They were sweet about it at first, but it became increasingly clear that the Dad was not so entertained by his incessant "hi! hi! Hi!" especially during the sacrament. Matthew pulled on his suit, yelled greetings, hit him and his wife with a book a few times. You know...the usual. Admittedly, I was pretty thrilled he was trying to look at them, engage them, and saying hi so many times, but I did intervene when they attempted to ignore his persistent and somewhat physical attempts. Well, a few minutes into the most sacred part of our meeting and during at time of total silence, Matthew spots someone on their phone....and flips out. He tries to climb his way over myself, Adi and Liam to get to this person and is yelling "PHONE! PHONE! My turn! I call!" and other such related phrases (again, note that I am thrilled with the language...just not with the timing or volume). When I attempt to deter him, it turns to screams and Adi starts to take a bit of a beating during the wrestle to contain him, so I quickly scoop her up in my armpit and start climbing over Liam, dragging a screaming Matthew who is reaching desperately for this person. Not a subtle exit.
Here's where it gets good. I walked out the door of the chapel and, literally, three sets of mother-arms start reaching for my children. Granted, I am almost dropping the armpitted child (Adi), but they instantly just started reaching out. Adi was swept away by one Mom--she got to me first. I guess I wasn't totally shocked because we Mom's just know. If our eyes are open even a crack, we can see desperation. But what surprised me was that a Dad snagged Matthew from me and started walking down the hall with him, tossing him around, wrestling him, and giving him the type of input he needed at that moment to quit perseverating on the phone. I was so grateful...and so touched. After that, three other people, one Mom and two young women, came out of the chapel to help me. They had seen/heard and, rather than sitting there, made their exit so they could offer their help as well. It brought tears to my eyes and I felt so loved by the "village" that was sweeping in to rescue.
One of the young women took Adi completely off my hands for the rest of the meeting, taking her to sit with her and her family. I took Matthew back in and attempted to sit down with a lonely Liam, but Matthew, within two seconds, spotted more phones and was at it again. Another exit was made and Liam was again left alone in the chapel. A sweet family came in and sat with Liam....and it was the Dad that offered! So Liam was now completely taken care of. After a few more minutes and a much-calmer Matthew, he and I went into the very back of the chapel and sat down again. You might be asking why in the world I wouldn't stay out in the hall....well, I had to play the piano for the choir in the middle of the meeting and had no idea when that was to take place. After a few minutes, Matthew spots something that entertains him, so I ask another Dad sitting in front of me to come and sit with Matthew while I play the piano. Didn't last too long and this Dad ended up in the hallway where I came and found them when the piece concluded. Perhaps not wanting to admit defeat, I did attempt to take Matthew in again towards the end (I wanted to listen!) and, within minutes, he was screaming and freaking out, so I dragged him out once more...and TWO Dad's followed me out, offering to take my son. I handed him over, he walked him outside, and I burst into tears. I was totally out of gas and out of emotional strength to deal with him. And, just when needed, I was rescued by someone who had their eyes wide open. I attempted to clean myself up so that it wasn't obvious I'd been sup-supping in the bathroom and the dude didn't know how desperate I had been, but some of my emotion, I realized, stemmed from the fact that I was just so touched.
As I've thought about that experience, not only have I been grateful to be surrounded by people who keep their eyes open--who are watching me in a good way, looking for ways they can ease my burden and helping me with some of the things that others might not even notice. It is because they are LOOKING. I feel like I sometimes get so caught up in my own "plight" that I forget to look. The people who intervened when I needed it so much on Sunday are a great example to me and inspire me to do a better job of keeping my eyes open to the needs of those around me. It has actually changed my week a little bit and some of the things I have done this week to help others have been because of the examples of my Sunday saints.
The next interpretation of the title....if you would have asked me two weeks ago how things were going, I would have said we are in a rut, a funk, a plateau, and things are really hard. And they were. BUT, I realized that I wasn't looking very hard for the good stuff in those weeks where my vision was clouded by the accidental head-butts from a thrashing and uncooperative body, the scratching, the screaming, the phone obsession, the potty accidents, the inability to cooperate, the interrupted sleep, the public displays, etc. Not that I fault myself for being frustrated--I think that is part of the journey and I wouldn't be normal if I didn't feel that way. But I knew, because we've been here before, that the experiences we were having with behaviors and lack of progress would be followed by another burst of progress. So I realized I needed to open my eyes a little wider to look for the good stuff. And the minute I did, I found it.
Matthew is starting to fill in counting numbers up to about four, label letters (x, y, g, h), put two words together (please read, watch movie, I call, want phone), and his eye contact has been beautiful lately. I had a rich reward this week when he walked up to me in the kitchen and, while I was fully expecting some request for my phone or food, looked me deep in the eye and said, "HUG!" I squatted down and he threw his arms around me (and legs...we're talking full hug here) and just gave me the biggest, best squeeze during which I felt my boy saying he loved me. Verbally that has yet to come, but I'll take non-verbal body language like that any day and feel it just as deeply. I'm so glad that my eyes were open enough that day to not brush him off, but to pause and look in his eyes so I could connect with my little guy.
I guess what I'm saying in a very long-winded way is that I feel grateful for people around me who have their eyes wide open and for the perspective that comes when I open mine. Life is good people. It's hard...and sometimes super trying....but it is good.
Soooo, Sunday was rough. Todd had been out of town since the previous Monday, arriving home late Saturday night completely thrashed from a grueling hike with the scouts. I was impressed--a group of 14-16 year old boys climbed St. Helens, walked 30+ miles along the Pacific Crest trail to Mt. Adams, and then summited that challenging beast. When Todd got home, I expected thrashed, but the worst part was his nasty feet--he could hardly walk. I put him to bed and, determined to be a good wife, bandaged his bloody, blistery stumps while he snoozed as exhaustion had completely overcome him. Yes, you should be impressed I did that. True love. The next morning, he slept in a little and, because of the pain in said "stumps," he had a hard time walking and didn't make it to the first part of church. As many a mother can attest, when you've been bearing the full load for an extended period of time (and yes, don't mock, but a week feels extended to me), you can only keep it together for so long. And I had done an awesome job of keeping it together (patting myself on the back right now). BUT, come Sunday, I was pretty tired and ready for the hubs to pick up some of the emotional slack, if nothing else. He couldn't. I completely understood and did my best to rise to the occasion--got kids all ready for church and fed before 8:30 because I had to be there early for choir practice (I'm the choir pianist). We made it....late.
So church starts and I'm single-Mom-in' it towards the back of the chapel. There are lots of visitors and Matthew immediately starts to try to chat it up with those in front of us (visitors). They were sweet about it at first, but it became increasingly clear that the Dad was not so entertained by his incessant "hi! hi! Hi!" especially during the sacrament. Matthew pulled on his suit, yelled greetings, hit him and his wife with a book a few times. You know...the usual. Admittedly, I was pretty thrilled he was trying to look at them, engage them, and saying hi so many times, but I did intervene when they attempted to ignore his persistent and somewhat physical attempts. Well, a few minutes into the most sacred part of our meeting and during at time of total silence, Matthew spots someone on their phone....and flips out. He tries to climb his way over myself, Adi and Liam to get to this person and is yelling "PHONE! PHONE! My turn! I call!" and other such related phrases (again, note that I am thrilled with the language...just not with the timing or volume). When I attempt to deter him, it turns to screams and Adi starts to take a bit of a beating during the wrestle to contain him, so I quickly scoop her up in my armpit and start climbing over Liam, dragging a screaming Matthew who is reaching desperately for this person. Not a subtle exit.
Here's where it gets good. I walked out the door of the chapel and, literally, three sets of mother-arms start reaching for my children. Granted, I am almost dropping the armpitted child (Adi), but they instantly just started reaching out. Adi was swept away by one Mom--she got to me first. I guess I wasn't totally shocked because we Mom's just know. If our eyes are open even a crack, we can see desperation. But what surprised me was that a Dad snagged Matthew from me and started walking down the hall with him, tossing him around, wrestling him, and giving him the type of input he needed at that moment to quit perseverating on the phone. I was so grateful...and so touched. After that, three other people, one Mom and two young women, came out of the chapel to help me. They had seen/heard and, rather than sitting there, made their exit so they could offer their help as well. It brought tears to my eyes and I felt so loved by the "village" that was sweeping in to rescue.
One of the young women took Adi completely off my hands for the rest of the meeting, taking her to sit with her and her family. I took Matthew back in and attempted to sit down with a lonely Liam, but Matthew, within two seconds, spotted more phones and was at it again. Another exit was made and Liam was again left alone in the chapel. A sweet family came in and sat with Liam....and it was the Dad that offered! So Liam was now completely taken care of. After a few more minutes and a much-calmer Matthew, he and I went into the very back of the chapel and sat down again. You might be asking why in the world I wouldn't stay out in the hall....well, I had to play the piano for the choir in the middle of the meeting and had no idea when that was to take place. After a few minutes, Matthew spots something that entertains him, so I ask another Dad sitting in front of me to come and sit with Matthew while I play the piano. Didn't last too long and this Dad ended up in the hallway where I came and found them when the piece concluded. Perhaps not wanting to admit defeat, I did attempt to take Matthew in again towards the end (I wanted to listen!) and, within minutes, he was screaming and freaking out, so I dragged him out once more...and TWO Dad's followed me out, offering to take my son. I handed him over, he walked him outside, and I burst into tears. I was totally out of gas and out of emotional strength to deal with him. And, just when needed, I was rescued by someone who had their eyes wide open. I attempted to clean myself up so that it wasn't obvious I'd been sup-supping in the bathroom and the dude didn't know how desperate I had been, but some of my emotion, I realized, stemmed from the fact that I was just so touched.
As I've thought about that experience, not only have I been grateful to be surrounded by people who keep their eyes open--who are watching me in a good way, looking for ways they can ease my burden and helping me with some of the things that others might not even notice. It is because they are LOOKING. I feel like I sometimes get so caught up in my own "plight" that I forget to look. The people who intervened when I needed it so much on Sunday are a great example to me and inspire me to do a better job of keeping my eyes open to the needs of those around me. It has actually changed my week a little bit and some of the things I have done this week to help others have been because of the examples of my Sunday saints.
The next interpretation of the title....if you would have asked me two weeks ago how things were going, I would have said we are in a rut, a funk, a plateau, and things are really hard. And they were. BUT, I realized that I wasn't looking very hard for the good stuff in those weeks where my vision was clouded by the accidental head-butts from a thrashing and uncooperative body, the scratching, the screaming, the phone obsession, the potty accidents, the inability to cooperate, the interrupted sleep, the public displays, etc. Not that I fault myself for being frustrated--I think that is part of the journey and I wouldn't be normal if I didn't feel that way. But I knew, because we've been here before, that the experiences we were having with behaviors and lack of progress would be followed by another burst of progress. So I realized I needed to open my eyes a little wider to look for the good stuff. And the minute I did, I found it.
Matthew is starting to fill in counting numbers up to about four, label letters (x, y, g, h), put two words together (please read, watch movie, I call, want phone), and his eye contact has been beautiful lately. I had a rich reward this week when he walked up to me in the kitchen and, while I was fully expecting some request for my phone or food, looked me deep in the eye and said, "HUG!" I squatted down and he threw his arms around me (and legs...we're talking full hug here) and just gave me the biggest, best squeeze during which I felt my boy saying he loved me. Verbally that has yet to come, but I'll take non-verbal body language like that any day and feel it just as deeply. I'm so glad that my eyes were open enough that day to not brush him off, but to pause and look in his eyes so I could connect with my little guy.
I guess what I'm saying in a very long-winded way is that I feel grateful for people around me who have their eyes wide open and for the perspective that comes when I open mine. Life is good people. It's hard...and sometimes super trying....but it is good.
Friday, May 10, 2013
Big Miracles!
I'm sitting in bed ready to go to sleep, but couldn't close my eyes until I described the events of the last two days. I don't want to forget the perspective and hope that I feel right now.
Todd and I took Matthew to Medford to visit our friends at the REACH Family Institute, the group we have been working with since last August that focus their lives on helping "brain-injured" children and adults. We first started working with them at the recommendation of one of Todd's patients, but I don't think I could have anticipated how we would feel less than a year later.
We left at 4 a.m. on Thursday and drove the 5 hours, arriving a little late. The first thing they do is evaluate Matthew--quiz him on the intellectual programs we've been doing, watch him run to see if there are changes in his muscle tone, crawl to see if there are changes in his cross pattern, watch him for signs of "reaction" to visual, tactile and auditory stimulus, etc.
A bit of background--part of Matthew's "program" with them includes flashcards made to very specific criteria. They include a word and then a picture of that word. Also, we put together books using some of the same flashcard topics and have pictures in those as well. Well, the first thing they did is lay out some of our books and cards so that they could quiz him a little bit to see how much he is retaining. Matthew immediately grabbed a group of flashcards, pointed to the top word, and said "fruit!" We looked....and sure enough, it was the word "fruit!" They tested him on several others to see if it was a fluke, and he continued to correctly identify SEVERAL of the words used in those flashcards!!!! I was amazed! Never would I have expected Matthew to be reading (or at least pre-reading) when he has just started to talk. An absolute miracle.
Also, meeting with them, after not being with them for four months, reminded me about just how much Matthew has progressed with his speech. He is pointing to and identifying objects, asking for things that he wants by name, repeating words that we say, and trying SO HARD to communicate. I am so incredibly proud of him.
There are days when it is really hard to parent Matthew. He can be obstinate, is so easily frustrated, gets obsessed with electronics, can be thoughtless and grabby, aggressive with his siblings, and so impulsive. And as he gets stronger, all of those behaviors become more and more challenging and, quite literally, painful. But after a couple of days like we just had where we were completely focused on Matthew, I am so filled with tender feelings for my little boy. I appreciate his sweet, happy personality, am impressed by his efforts to do things that are hard for him (a.k.a. talking), and just treasure my little boy. I sat in the car and watched him walk across a parking lot with Todd, not throwing himself on the ground with a noodle-body and forcing Todd to drag him, but rather just walking beside him, occasionally looking up at his Dad. I was SO filled with a feeling of gratitude that God sees us fit to raise one of his most choice spirits.
I feel so inadequate raising a child with challenges like these. I don't know if I do it right and I get so impatient sometimes. It is easy to watch what he isn't doing and want to feel sad or sorry for myself, or to compare him to typical kids and long for what we don't have. But then I watch him walking across a parking lot with Dad and I realize that we are doing something right....we are loving the heck out of this little kid and are sooo blessed that he is part of our family.
I'm doing a terrible job of putting into words just what an incredible couple of days we had. I felt like I recognized so many miracles over the past four months. What a gift it is to catch a glimpse of Matthew's best self and to be filled with wonder at the things he might be capable of if we continue to believe in him!
Todd and I took Matthew to Medford to visit our friends at the REACH Family Institute, the group we have been working with since last August that focus their lives on helping "brain-injured" children and adults. We first started working with them at the recommendation of one of Todd's patients, but I don't think I could have anticipated how we would feel less than a year later.
We left at 4 a.m. on Thursday and drove the 5 hours, arriving a little late. The first thing they do is evaluate Matthew--quiz him on the intellectual programs we've been doing, watch him run to see if there are changes in his muscle tone, crawl to see if there are changes in his cross pattern, watch him for signs of "reaction" to visual, tactile and auditory stimulus, etc.
A bit of background--part of Matthew's "program" with them includes flashcards made to very specific criteria. They include a word and then a picture of that word. Also, we put together books using some of the same flashcard topics and have pictures in those as well. Well, the first thing they did is lay out some of our books and cards so that they could quiz him a little bit to see how much he is retaining. Matthew immediately grabbed a group of flashcards, pointed to the top word, and said "fruit!" We looked....and sure enough, it was the word "fruit!" They tested him on several others to see if it was a fluke, and he continued to correctly identify SEVERAL of the words used in those flashcards!!!! I was amazed! Never would I have expected Matthew to be reading (or at least pre-reading) when he has just started to talk. An absolute miracle.
Also, meeting with them, after not being with them for four months, reminded me about just how much Matthew has progressed with his speech. He is pointing to and identifying objects, asking for things that he wants by name, repeating words that we say, and trying SO HARD to communicate. I am so incredibly proud of him.
There are days when it is really hard to parent Matthew. He can be obstinate, is so easily frustrated, gets obsessed with electronics, can be thoughtless and grabby, aggressive with his siblings, and so impulsive. And as he gets stronger, all of those behaviors become more and more challenging and, quite literally, painful. But after a couple of days like we just had where we were completely focused on Matthew, I am so filled with tender feelings for my little boy. I appreciate his sweet, happy personality, am impressed by his efforts to do things that are hard for him (a.k.a. talking), and just treasure my little boy. I sat in the car and watched him walk across a parking lot with Todd, not throwing himself on the ground with a noodle-body and forcing Todd to drag him, but rather just walking beside him, occasionally looking up at his Dad. I was SO filled with a feeling of gratitude that God sees us fit to raise one of his most choice spirits.
I feel so inadequate raising a child with challenges like these. I don't know if I do it right and I get so impatient sometimes. It is easy to watch what he isn't doing and want to feel sad or sorry for myself, or to compare him to typical kids and long for what we don't have. But then I watch him walking across a parking lot with Dad and I realize that we are doing something right....we are loving the heck out of this little kid and are sooo blessed that he is part of our family.
I'm doing a terrible job of putting into words just what an incredible couple of days we had. I felt like I recognized so many miracles over the past four months. What a gift it is to catch a glimpse of Matthew's best self and to be filled with wonder at the things he might be capable of if we continue to believe in him!
Saturday, April 20, 2013
Angels in the Outfield
It's interesting, the things that make me emotional sometimes. Today it was baseball.
Matthew has joined what is called "The Miracle League." It is a group of kiddos with varying disabilities who get to play baseball with the assistance of volunteers--coaches, professional, college, and high school athletes--who literally take them through every step of the game, offering assistance when necessary.
Today was my first experience with this and I promise you, I saw angels in that outfield. Matthew was totally uncooperative--I'm not exaggerating. When up to bat, they'd have to motor him through the entire event and, when it was time to run to first, he'd go limp and they'd carry/drag him to first base. He'd semi-run/walk/splash in mud puddles as he made his way around the rest of the bases. While playing in the outfield, he'd wave at me, yell "HI! HI! HI!" over and over, and several times, escape and run madly for the fence where he could see us. Adi and I just laughed, waved back, and attempted to "negotiate" with him, trying to get him to go back to the outfield. I watched his TWO buddies (not just one, but two "buddies") struggled with him and literally chased him around the muddy field as they worked to keep track of my squirmy, distracted, totally uninterested player.
They play four innings--each team bats and plays outfield twice. Every kid hits. There were some kids who would swing with all their might and strength...over and over and over. And the sweet, patient pitcher would encourage them and throw ball after ball while we, parents and friends in the stands, would cheer each kid like it was the world series. When they would hit, I'd almost cry...every time! By the end, I knew everyone's names and started to learn the stories of the other kiddos on his team. Most have been playing for several seasons, and many of the parents watched Matthew, laughed WITH me, and sympathized, saying their kids struggled at first as well...encouraging me to stick with it. They would cheer just as loudly as I would when Matthew got up to bat.
During the last inning, Matthew was in the outfield. After his first experience (though he did catch a grounder--completely assisted, but credited with the catch nonetheless), they decided to take Matthew a little farther outfield. I watched them find a game that he could and would do..."run" the ball back and forth between his buddies. He can't really throw a ball, so catch was out of the question. He won't stand still to save his life, so playing a position was a bit tough. But he likes to run to people....so they gave him a ball, and he ran back and forth between them, smiling and squealing every time he'd reach one of them. I felt SO grateful to these kind "buddies" who met my Matthew where he was instead of trying to get him to just play the game he'd come to play.
I've come to recognize these past months, especially on those days where the "daily" gets the best of me, that I'm not alone in this. It is absolutely taking a village to raise my son, and I am so touched that, in a world where things can be so ugly, there are angels in my outfield.
Matthew has joined what is called "The Miracle League." It is a group of kiddos with varying disabilities who get to play baseball with the assistance of volunteers--coaches, professional, college, and high school athletes--who literally take them through every step of the game, offering assistance when necessary.
Today was my first experience with this and I promise you, I saw angels in that outfield. Matthew was totally uncooperative--I'm not exaggerating. When up to bat, they'd have to motor him through the entire event and, when it was time to run to first, he'd go limp and they'd carry/drag him to first base. He'd semi-run/walk/splash in mud puddles as he made his way around the rest of the bases. While playing in the outfield, he'd wave at me, yell "HI! HI! HI!" over and over, and several times, escape and run madly for the fence where he could see us. Adi and I just laughed, waved back, and attempted to "negotiate" with him, trying to get him to go back to the outfield. I watched his TWO buddies (not just one, but two "buddies") struggled with him and literally chased him around the muddy field as they worked to keep track of my squirmy, distracted, totally uninterested player.
They play four innings--each team bats and plays outfield twice. Every kid hits. There were some kids who would swing with all their might and strength...over and over and over. And the sweet, patient pitcher would encourage them and throw ball after ball while we, parents and friends in the stands, would cheer each kid like it was the world series. When they would hit, I'd almost cry...every time! By the end, I knew everyone's names and started to learn the stories of the other kiddos on his team. Most have been playing for several seasons, and many of the parents watched Matthew, laughed WITH me, and sympathized, saying their kids struggled at first as well...encouraging me to stick with it. They would cheer just as loudly as I would when Matthew got up to bat.
During the last inning, Matthew was in the outfield. After his first experience (though he did catch a grounder--completely assisted, but credited with the catch nonetheless), they decided to take Matthew a little farther outfield. I watched them find a game that he could and would do..."run" the ball back and forth between his buddies. He can't really throw a ball, so catch was out of the question. He won't stand still to save his life, so playing a position was a bit tough. But he likes to run to people....so they gave him a ball, and he ran back and forth between them, smiling and squealing every time he'd reach one of them. I felt SO grateful to these kind "buddies" who met my Matthew where he was instead of trying to get him to just play the game he'd come to play.
I've come to recognize these past months, especially on those days where the "daily" gets the best of me, that I'm not alone in this. It is absolutely taking a village to raise my son, and I am so touched that, in a world where things can be so ugly, there are angels in my outfield.
Wednesday, March 20, 2013
Two sides
A few days after Matthew's diagnosis, I was moderating an event for work. The speaker was a man named Aman. I have seen a thousand web events and we have hosted some of the most incredible speakers in the world on our platform. I'm so lucky because often times, I forget I'm working and get lost in the content. Well, this was one of those presentations. There was something he said that stuck with me that I want to share because it has guided my thoughts and behavior over the past two weeks.
He was talking about the fact that we are a world mired in the idea that we need answers--we search for answers. The ultimate quest is to find answers. He suggested that is a paradigm that we need to shift and realize that the power comes not necessarily in the answers, but in learning to ask the right questions. My take on it--we cannot ask a question that is beyond our circle of knowledge. We can only ask those that are right on the outside edge of that circle. As our knowledge expands, we are able to ask better, deeper, more profound, searching questions. And our circle of knowledge will continue to expand as we do so. It stops when we think we get to answers.
He also suggested that there are two sides to everything--more than one way of looking at everything (like two sides to a coin--completely different, opposite each other, but both part of the same coin). Again, my take on it--as we ask questions and start to understand both sides of the coin, we are better equipped to make good decisions.
This made me think about my quest to get answers about Matthew's diagnosis. I wanted to put a label on it for the sake of understanding and so that I knew how to deal with it. But I realize that I will be able to learn even more if I focus more on asking the right questions. An example of that is the question that we were asked on every eval, but that I always struggled a little bit to answer--what are Matthew's strengths? The more time I spend focusing on those types of questions, the more progress I believe we will make in understanding and bonding with our son which is the ultimate goal for us.
Sunday, March 17, 2013
French Fries!!!
This week has been an EPIC speech week, but behavior wise, we've had our good and bad days.
Matthew has started to imitate words. To us, that is one of the greatest victories we could have. At one point, our developmental pediatrician told us that, if we could get Matthew to start imitating language, we'd be in great shape. We have arrived....it has begun. I'm doing a not-so-pretty dance of joy over that.
Example--this week, we were driving in the car and I had just been a bad Mom and snagged a little Burgerville (with their gluten free bun--gotta love it when fast food accommodates our special diet). The kids were in the backseat starving because I had waited too long to feed them. Matthew starts yelling at me for "french fry! french fry!" I loved it! I was giddy the whole way home and gave him one at a time so I could hear him yell it at me a zillion times.
We are potty training Adi and talking about "pee" and "poop" a lot, so Matthew also talks about that a lot....but he TALKS! He echos those terms frequently and even follows us to the potty more often than before to do his own business. Nice how some of the first phrases my kids echo deal with our favorite topics, eh? "Toot" is also among his favorite terms. And he uses those spontaneously. Gross, but they are words!!! We'll take 'em! As part of this process, we bribe Adi with her favorite treat--gum. Matthew busted out with an "I want gum" the other day as well. Count them people...THREE WORDS. Rock on, my little man!
Now, behavior wise, we haven't had the most epic week--good and bad days. The good ones have been really good though....which is wonderful! However, the bad ones have been pretty nasty. Lots of flailing, wrestling, running in circles around me, not wanting to walk with me (translate: bolting), etc. He is doing something new that really has Todd and I concerned...and makes him look a bit more "different." He plays with his ears a lot. He zones out a bit and grabs his ears. I almost feel like we are looking at this behavior and inclined to label it stimming (sp??) because of his diagnosis. I'm not sure that's what it is, but I also don't want to be naive and ignore it. So I've talked to his therapists about it and asked what the appropriate response it, especially if it is a stimming habit, and we are responding as they instructed (not drawing attention to the behavior and talking about it, but rather interfering with it and redirecting, if that makes sense).
Another challenge is that Matthew seems to want whatever Adi has. And he is not gentle about it. You can imagine just how well this goes over in church. We are the people no one wants to sit by. Actually, let me take that back. We are the people that those who want to be entertained seek out to sit by, but those who actually want to pay attention avoid. We were in another ward this week and Adi and Matthew were going at it like cats and dogs--grabbing stuff from each other and SCREAMING when things were taken from them. Adi got so mad at Matthew that she yanked the hair of the person in front of us. Not quite sure why her anger was redirected that way, but you can imagine how well that went over. Ah, the joys.
Matthew gives kisses now....that's another victory. Onward and upward. I'm tired after this week, I admit. Todd and I have been so insanely busy (and I've had no phone to speak of because Matthew bit through my already-cracked screen which he had chucked onto the cement floor of the dr's office), so I feel like I need a little recharge so that we are able to get through the next week, but I'm certainly celebrating because we have had lot of little victories!!!
Matthew has started to imitate words. To us, that is one of the greatest victories we could have. At one point, our developmental pediatrician told us that, if we could get Matthew to start imitating language, we'd be in great shape. We have arrived....it has begun. I'm doing a not-so-pretty dance of joy over that.
Example--this week, we were driving in the car and I had just been a bad Mom and snagged a little Burgerville (with their gluten free bun--gotta love it when fast food accommodates our special diet). The kids were in the backseat starving because I had waited too long to feed them. Matthew starts yelling at me for "french fry! french fry!" I loved it! I was giddy the whole way home and gave him one at a time so I could hear him yell it at me a zillion times.
We are potty training Adi and talking about "pee" and "poop" a lot, so Matthew also talks about that a lot....but he TALKS! He echos those terms frequently and even follows us to the potty more often than before to do his own business. Nice how some of the first phrases my kids echo deal with our favorite topics, eh? "Toot" is also among his favorite terms. And he uses those spontaneously. Gross, but they are words!!! We'll take 'em! As part of this process, we bribe Adi with her favorite treat--gum. Matthew busted out with an "I want gum" the other day as well. Count them people...THREE WORDS. Rock on, my little man!
Now, behavior wise, we haven't had the most epic week--good and bad days. The good ones have been really good though....which is wonderful! However, the bad ones have been pretty nasty. Lots of flailing, wrestling, running in circles around me, not wanting to walk with me (translate: bolting), etc. He is doing something new that really has Todd and I concerned...and makes him look a bit more "different." He plays with his ears a lot. He zones out a bit and grabs his ears. I almost feel like we are looking at this behavior and inclined to label it stimming (sp??) because of his diagnosis. I'm not sure that's what it is, but I also don't want to be naive and ignore it. So I've talked to his therapists about it and asked what the appropriate response it, especially if it is a stimming habit, and we are responding as they instructed (not drawing attention to the behavior and talking about it, but rather interfering with it and redirecting, if that makes sense).
Another challenge is that Matthew seems to want whatever Adi has. And he is not gentle about it. You can imagine just how well this goes over in church. We are the people no one wants to sit by. Actually, let me take that back. We are the people that those who want to be entertained seek out to sit by, but those who actually want to pay attention avoid. We were in another ward this week and Adi and Matthew were going at it like cats and dogs--grabbing stuff from each other and SCREAMING when things were taken from them. Adi got so mad at Matthew that she yanked the hair of the person in front of us. Not quite sure why her anger was redirected that way, but you can imagine how well that went over. Ah, the joys.
Matthew gives kisses now....that's another victory. Onward and upward. I'm tired after this week, I admit. Todd and I have been so insanely busy (and I've had no phone to speak of because Matthew bit through my already-cracked screen which he had chucked onto the cement floor of the dr's office), so I feel like I need a little recharge so that we are able to get through the next week, but I'm certainly celebrating because we have had lot of little victories!!!
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