****** WARNING: THIS POST WILL DISCUSS BODILY FUNCTIONS *******
Potty training. We have read a few books about this, and basically decided that the longer we wait, the harder it will be. It is a necessary life skill that above any academics offered, or any other social grace he could learn, will provide the most opportunity for him in his life. I summoned up the courage to make an attempt. Last year's attempt certainly left me a little gun shy. The kid quit eating, drinking, and pooping for 3 days. This was downright scary for me - my child refused water!! But the silver lining in that bad episode was pointed out to me by our pediatrician: The kid was smart enough to realize that food and drink evolve into waste product, and he attempted to take control of the wheel. We decided that Zach knew he wasn't ready.
OK - so as altruistic as the decision to potty train might sound, it also gave me an excuse not to shampoo the carpets in the house for another month or so. Plus, Steve and I had an agreement that we could not have more than one thing at a time peeing on the carpets in the house. So, if we get Zach potty trained, we can start considering that pet dog Sophie and I are gunning for.
I made the decision to proceed, informed his school and his itinerant providers (home therapists) and off we went roughly three weeks ago. The first week was tough, he showed little cognizance of what was going on. We couldn't keep up with the amount of clothes getting washed! Second week, we bore witness to pee entering the actual potty. At the tail end of week 2, we saw way more pee entering the potty than hitting the tidy whities. HURRAY!! Unfortunately, BMs had not been quite as successful.
Until we potty trained I never noticed something so terrific about Zach: he prefers our company than to be by himself. (Weird for an autistic kid, right?) My observation is that when Zach leaves the room from where Sophia is playing or I am cooking or whatnot, that is a clear indication that he is going to have a BM. Such a strange way to find out such a terrific attribute.
But as much fun as this must sound (*sarcasm*), it does come with it's moments. First off, as casual as I am about discussing this, make no bones about it, I do not like to be urinated or defecated on. Oh yeah. Nor do I like being vomited on. Why do I mention this? One afternoon, after Zach's itinerant provider had a good session with Zach, Zach walked up to her and gave her a cracker he had been eating. That look meant one thing. She was oblivious, I was not. I had seen that look in his face before: barf was coming our way. As the running in slow motion has come to be a common event in our house, I got to Zach in time to cup my hands in front of his face and quickly move him over our hardwood floors as opposed to our wall to wall carpeting. And he let loose. As I captured the product, Zach was so startled that he then proceeded to urinate. Wild times, I'll tell you. It reminds me of frat house parties minus the beer and sorority girls.
Then there was the trip home from school where I decided, ignorantly so, to drop off the spoils of our garage sale to our bank. Being that I had a lot of change, I decided to enter the actual credit union as opposed to the drive thru. They have a change counter in the bank, free to all members. As I entered the second set of double doors, I realized we were in trouble. It was member appreciation week, and there were lots of youngsters coming at us asking if we wanted candy, popcorn, or if Zach wanted to play a game. I was flustered with all the unwanted attention, so I can only imagine how Zach felt. As I scurried to the change machine and had Zach dump the change in, I was growing weary already at the fact that we had lots of eyes watching us.
Before y'all rip into me about bringing my potty training/brief wearing toddler into a public space with no capture mechanism in place, I have to plead that I was misled prior to this journey to the bank. When I picked him up from school that day, the TA's told me he had no accidents and did great! Knowing they had just put him on the toilet prior to is release to me, I felt very safe. I was not to realize the truth until I went home: Zach had held his pee for 17 hours. This is not doing great, although it might be accident free. And the story continues...
Back to the bank: I then went up to the island to fill out my deposit slip and a young girl helping out with the bank "festivities" offered to play with Zach while I completed my transaction. Feeling that this may speed up my transaction time, I decided that playing with the Wii within 10 feet of me was fairly safe, so I acquiesced. As I finished completing my deposit slip, I glanced over to the Wii prior to walking up to the teller. And there was that look again along with the leg tilt/knee bend. Once again, I felt like Lee Majors as the slow motion effects took place and I ran to grab Zach. But it was too late. I made a dash for the bathroom and off we went. I took his wet shorts and undies off, cleaned him up, and sat him on the potty, explaining to him that pee goes in the potty, once again. I ran his clothes under water and rung them out.
Then I thought: "What the hell am I going to do now?? I am holed up in the bathroom with my son with autism, with soiled clothing, and a host of bewildered and unamused spectators awaiting for me out in the bank lobby to rectify this situation." I put a plan together in my head, "He has clean clothes in the van." And then it struck me, my van keys were out on the island where I was filling out the deposit slip. Then it really struck me: I had left $500 in an envelope sitting out on the island unattended. OMG!!!!!
Pride has been gone for years. Here goes nothing. I would get him dressed in his damp shorts. Wrap his underwear in paper towel and stick it in my pocket. Head high, I would carry Zach out of the bathroom, make a dash for the counter and grab my keys and envelope and promptly go to the car, avoiding eye contact as necessary. No time to waste, I exited and was given a grace from above. One of Zach's teaching aids was smiling back at me. She said "Hi! How are you?" and then noticed the feared look on my face. She looked down at Zach, and realized what happened. She then asked if I had dry clothes in the car, which I did. She told me, "Go get them. I have him."
That face looked like a light beam shown from up above. Not only did I get a change of clothes and get him dressed. I decided, that I would complete my transaction. And I did. And the tellers did not look happy about it. But I did not really give a rat's patooti.
As we exited the bank, I looked over to the young girl and mouthed "Sorry." She looked back at me and I realized someone had pulled a throw rug over where Zach had done his business. I then mouthed "Thank you" to her. And we left.
Here we are in week 3 and Zach has not had an accident in 3 days. We went to watch the Syracuse Chiefs play last evening and he even did his business at the stadium. We are not out of the trenches yet - Zach has yet to initiate his sessions by notifying me he has to go or entering the bathroom by himself. But this is substantial progress, and has affirmed our decision that it was time for him to learn. It also will be a sign to the professionals out there, that once again, Steve and I were able to determine that Zach was ready to learn something, and not wait for someone else to make the call.
Way to go Zach!
Monday, August 9, 2010
Tuesday, August 3, 2010
Another Day in the Life of Luxury
It may have been quiet on the blog, but things have definitely not been quiet at home. In fact, things have been hopping so much, a shower is often a luxury, let alone an hour to write down the events of our lives. Lord knows that I am never proud that these posts are far from proofread or edited and my grammar negligence must be patently obvious. Especially becuase I used to be such a stickler for these things. Now, I just don't care. OK not true. Perfection was never achievable in the first place. My desire to attempt to reach it has now faded as well. In the case of my writing, unlike any other event in my life, I have decided to run with scissors.
This is probably a good thing. I am not sure if I was a type A or not, but if I had to wager a guess, I would say that I was pretty close. Life has happened and if I was a type A, you certainly wouldn't recognize it by my current behavior. (Type A referring to personality theory in which individuals can be described as impatient, highly competitive, ambitious, aggressive, having difficulty relaxing.)
Things are falling of my plate left and right. I cannot accomplish much of anything. I am taking each day as it comes, and I am getting the base minimum accomplished. I feel that my attempts at advocacy for Zach has been stifled by an inefficient, ineffective system whose only goal is to self sustain. I also know I have "hit the wall" (runner's speak) in this marathon and am pushing through waters that feel more more viscous than 20 pounds of gelatin in an ounce of water.
In an effort to not feel like I have not totally failed my beautiful son, I have attempted to bring a smile to his face every day I can. This summer we have managed trips to Thunder Island to play at the water park, Wellesley Island to swim with friends at their cabin, the sunflower maze in Camillus where Zach resisted in fear at first and proceeded to run through just about every loop in the bee shaped maze, swimming at Gilly Lake, swimming in our little pool, playdates at a few friends houses, lots of hugs and kisses in between these events and the endless school and therapy.
I have also entered him into Potty Training Bootcamp. (To be discussed in another post)
Sophie has had swimming lessons, ballet camp, soccer/basketball/lacrosse camp, birthday parties, and this week vacation bible school. She has enjoyed our outings and loves spending time with her grandmother and friends.
Amongst all of this, we had a successful garage sale where nearly 85% of our baby items are no longer in our possession. So strange to see them go away. So definite a symbol that our life is in a new phase.
This is probably a good thing. I am not sure if I was a type A or not, but if I had to wager a guess, I would say that I was pretty close. Life has happened and if I was a type A, you certainly wouldn't recognize it by my current behavior. (Type A referring to personality theory in which individuals can be described as impatient, highly competitive, ambitious, aggressive, having difficulty relaxing.)
Things are falling of my plate left and right. I cannot accomplish much of anything. I am taking each day as it comes, and I am getting the base minimum accomplished. I feel that my attempts at advocacy for Zach has been stifled by an inefficient, ineffective system whose only goal is to self sustain. I also know I have "hit the wall" (runner's speak) in this marathon and am pushing through waters that feel more more viscous than 20 pounds of gelatin in an ounce of water.
In an effort to not feel like I have not totally failed my beautiful son, I have attempted to bring a smile to his face every day I can. This summer we have managed trips to Thunder Island to play at the water park, Wellesley Island to swim with friends at their cabin, the sunflower maze in Camillus where Zach resisted in fear at first and proceeded to run through just about every loop in the bee shaped maze, swimming at Gilly Lake, swimming in our little pool, playdates at a few friends houses, lots of hugs and kisses in between these events and the endless school and therapy.
I have also entered him into Potty Training Bootcamp. (To be discussed in another post)
Sophie has had swimming lessons, ballet camp, soccer/basketball/lacrosse camp, birthday parties, and this week vacation bible school. She has enjoyed our outings and loves spending time with her grandmother and friends.
Amongst all of this, we had a successful garage sale where nearly 85% of our baby items are no longer in our possession. So strange to see them go away. So definite a symbol that our life is in a new phase.
Saturday, July 17, 2010
Ballet Camp
While Steve is at work, Zach is at school, and I am at home eating bon bons and watching the soaps, Sophia has attended Ballet Camp. One week every day for a few hours. Perfect. She got more out of this than she does the last several months of ballet lessons. I often feel so neglectful of her. I am actually thinking of looking for someone to come and do activities with her a couple of times a week to give her the 1 on 1 she sees Zach getting. Any interested parties out there?
In the meantime, I got to feel what it was like to be a normal parent again - albeit for a short time, by attending her end of dance camp impromptu recital. Of course, this is a joke, because I am quite sure I am the only one in the room who began to tear during this. Geesh. I am so overwhelmed with what she can do and who she is. I laugh, because meanwhile I cry so very little at things, that I surprise myself. I know how sad/angry/frustrated I have been - yet nothing. But observing Sophia do her thing just sets me off.
After the recital, Babcia Morphet, Sophia and I visited Friendly's as a girls outting to celebrate us Morphet women being together. First thing I noted: Sophia knew exactly how to handle the restaurant thing although we barely go out. She made appropriate requests of the waitress and didn't defer to me to handle anything. I realized that this sophistication has caught me off guard and then I reminded myself: She is almost 6!
And then there is Zach. New allergy results are in - cashews and pistachio nuts are out! We have given them to him frequently and never noticed anything, but apparently, these are out of all allergens, pretty heavy duty. Oranges and soy were up there too. Milk and egg yolks also made the list - but what didn't was gluten (wheat, barley, etc.). We are meeting with Zach's doctor in a few weeks to discuss. I am wondering if we might be able to start adding it back in to his diet this fall??
Other test results indicated an iron deficiency. The pediatrician's office called in an Rx. Then I received a call from the pharmacy stating that insurance won't cover this because it is considered a supplement. Uhh, what? There is a test, it shows a deficiency, the doctor wrote up an Rx, this is a supplement? How come my prenatal vitamins were covered?
Poor Steve. Once again, I gave him marching orders to go to HR and ask them to look into this. The response: the item is inexpensive. Huh? $11. Yup. We are quibbling over $11. $11 a month that is - making it $132 for a year. So Zach's therapy is too expensive to cover and Zach's Rx is to inexpensive to cover. Huh? Yes, I understand the concept of policy - and this insurance policy is navigated to suit someone's needs - but not ours. What have we been paying into for all these years? Again - I am confused by the prenatal vitamins being covered but not the iron. Ugghh.
If you are thinking that the picture above has some kind of special effect - I believe that special effect would be fingerprints on my lens - likely caused by a 3 or 5 year old child needing to touch things that I have told them not to. Uugghh.
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Wednesday, July 7, 2010
So you read my posts do you?
A post I started from awhile ago....
Met with someone from Zach's school and from Sophia's school all within 24 hours. I should feel better about my kids and what they are up to, but I just don't. I am definitely someone who worries. I cannot believe how much like my mother I am that way. Ahhh Rosalie.
My concerns have been expressed. There is some relief in that. But life experience has taught me that there is another part of this equation: what will be the reaction to my action? I sometimes think that these events are more like going to a confessional: Forgive me school, I know that I am a bad Mom, it has been 4 days since I last checked over Sophia's schoolwork in her backpack. However, I also see that this and this is going on, can we try this? Will they take me seriously - this near manic mother with bags under her eyes, cortisol in her waist, and no background in any of this stuff? One walk into a preschool or a kindergarten classroom and I know that life is crazy for these teachers. It's a bunch of little kids for Pete's sake! It's controlled chaos. I don't think I could manage in that environment very well for very long. Wait a second - I am living in that environment all day long! haha It's just not 24 of them.
I feel that Sophia is likely getting what she needs at this point. We can do some follow through and preemptive skill building at home. She can learn, she is above where she needs to be cognitively, she has a social repertoire that is working and has built a friend base up. We still have those pesky fine motor skills to work on (what feels like endlessly) but she appears happy, healthy, active, and moving in the right direction. A parent will always be concerned about their child, but rest is assured that Sophia is doing great for now and will likely continue that in the next year. I have asked for a copy of the 1st grade report card so that I can focus on building the skills in her home environment that they will be working on next year.
Zach I am just not as sure about. I have these feelings that he is not progressing as he should within the context of him being in an environment that should be working on getting him up to speed. And that has made me think - perhaps I don't understand the goal of this intervention. Is it to get Zach up to speed? Or is it to make sure Zach can go to school and not cause too much commotion? I would love to hear from others out there, mothers, fathers, teachers, therapists, what they perceive early intervention and special ed to be all about.
I think the answer is a bit of both - I would like to think they are adapting their teaching styles to my son's learning styles to optimize his learning potential and have him make progress at a rate relative to that of his typical peers.
A trip to the developmental pediatrician didn't resolve my concerns. He agreed after observing Zach that his current program might not be the right fit for him and recommended trying to get him into a 2.5 hour program and increasing his home therapy intensity.
Back to now.
I like Zach's school. I think the therapists and teachers are good. The problem is just because it is good doesn't mean it is right for Zach. Truth be told, Zach needs more intensity right now. With appropriate intensity he masters skills more readily and we have seen him easily transfer these skills into larger/different settings, referred to as generalization. The past two doctor's visits for Zach have both specified getting him a one on one aid. And here I am. And now you know why the posts haven't been coming as frequently, I am overwhelmed with what to do. I don't want to undermine his school. I think his SLP, OT and PT are top notch. However, there has been a large turnover in his classroom that has me concerned. A few of the now departed therapists (some have left on their own accord, others were terminated) have indicated strong discord and organization in the classroom. But I fear losing the continuity, the consistency, the ability to get out of the house and experience others in a classroom setting.
Zach's last day of school was a picnic. The school extended invites to the family to come join activities and lunch. They even put on a concert. And that is what made me sad. They were doing outstanding things for the kids who get it. I was so excited to see a friend's son (who is dx'ed) dancing and mimicking the movements of the teacher. But on the stage, even amongst other kids with ASDs, Zach looked lost. He was staring off into space. I came home and told Steve that Zach appeared more autistic at school than he did at home. He just doesn't seem there yet.
He is attending summer session there currently. I am trying to figure out what to do. I am consulting with the professionals and talking to other families at his school, in the other classrooms as well as the one he is in, and other parents whose kids did home programs. I am torn. Steve defaults to me. This feels like more pressure than just about anything else I have had.
So now my delinquency is explained. This road we travel is a maze with pitfalls located here and there. This one feels deep. Let's see if I can get myself out of this whole that I have entered.
Met with someone from Zach's school and from Sophia's school all within 24 hours. I should feel better about my kids and what they are up to, but I just don't. I am definitely someone who worries. I cannot believe how much like my mother I am that way. Ahhh Rosalie.
My concerns have been expressed. There is some relief in that. But life experience has taught me that there is another part of this equation: what will be the reaction to my action? I sometimes think that these events are more like going to a confessional: Forgive me school, I know that I am a bad Mom, it has been 4 days since I last checked over Sophia's schoolwork in her backpack. However, I also see that this and this is going on, can we try this? Will they take me seriously - this near manic mother with bags under her eyes, cortisol in her waist, and no background in any of this stuff? One walk into a preschool or a kindergarten classroom and I know that life is crazy for these teachers. It's a bunch of little kids for Pete's sake! It's controlled chaos. I don't think I could manage in that environment very well for very long. Wait a second - I am living in that environment all day long! haha It's just not 24 of them.
I feel that Sophia is likely getting what she needs at this point. We can do some follow through and preemptive skill building at home. She can learn, she is above where she needs to be cognitively, she has a social repertoire that is working and has built a friend base up. We still have those pesky fine motor skills to work on (what feels like endlessly) but she appears happy, healthy, active, and moving in the right direction. A parent will always be concerned about their child, but rest is assured that Sophia is doing great for now and will likely continue that in the next year. I have asked for a copy of the 1st grade report card so that I can focus on building the skills in her home environment that they will be working on next year.
Zach I am just not as sure about. I have these feelings that he is not progressing as he should within the context of him being in an environment that should be working on getting him up to speed. And that has made me think - perhaps I don't understand the goal of this intervention. Is it to get Zach up to speed? Or is it to make sure Zach can go to school and not cause too much commotion? I would love to hear from others out there, mothers, fathers, teachers, therapists, what they perceive early intervention and special ed to be all about.
I think the answer is a bit of both - I would like to think they are adapting their teaching styles to my son's learning styles to optimize his learning potential and have him make progress at a rate relative to that of his typical peers.
A trip to the developmental pediatrician didn't resolve my concerns. He agreed after observing Zach that his current program might not be the right fit for him and recommended trying to get him into a 2.5 hour program and increasing his home therapy intensity.
Back to now.
I like Zach's school. I think the therapists and teachers are good. The problem is just because it is good doesn't mean it is right for Zach. Truth be told, Zach needs more intensity right now. With appropriate intensity he masters skills more readily and we have seen him easily transfer these skills into larger/different settings, referred to as generalization. The past two doctor's visits for Zach have both specified getting him a one on one aid. And here I am. And now you know why the posts haven't been coming as frequently, I am overwhelmed with what to do. I don't want to undermine his school. I think his SLP, OT and PT are top notch. However, there has been a large turnover in his classroom that has me concerned. A few of the now departed therapists (some have left on their own accord, others were terminated) have indicated strong discord and organization in the classroom. But I fear losing the continuity, the consistency, the ability to get out of the house and experience others in a classroom setting.
Zach's last day of school was a picnic. The school extended invites to the family to come join activities and lunch. They even put on a concert. And that is what made me sad. They were doing outstanding things for the kids who get it. I was so excited to see a friend's son (who is dx'ed) dancing and mimicking the movements of the teacher. But on the stage, even amongst other kids with ASDs, Zach looked lost. He was staring off into space. I came home and told Steve that Zach appeared more autistic at school than he did at home. He just doesn't seem there yet.
He is attending summer session there currently. I am trying to figure out what to do. I am consulting with the professionals and talking to other families at his school, in the other classrooms as well as the one he is in, and other parents whose kids did home programs. I am torn. Steve defaults to me. This feels like more pressure than just about anything else I have had.
So now my delinquency is explained. This road we travel is a maze with pitfalls located here and there. This one feels deep. Let's see if I can get myself out of this whole that I have entered.
Monday, June 21, 2010
Fathers
This past weekend was Father's Day. We were invited off to Geneva Lake to spend the afternoon with my brother and his family as they rented a home for a week on the lake. Driving and hour and half each way was likely not Steve's idea of how he wished to spend his father's day. I felt bad, but felt this event was a nice offer and we needed to get away, even if it was for the day.
Steve was given the mundane presents of sports socks, a lunch box and a new cover for his grill - and the extra special surprises of a pencil holder with pencils from Zach and a coupon book from Sophia. The coupons included one for a hug and one for helping with the dishes (although she mentioned that she would need help with the dishes.) These little surprises put a smile on my face. I realized there are no gifts great enough for Steve.
I don't really talk too much about our relationship. It is strained for sure. But I know as much as it is strained, he is doing the best he can, and it actually is quite a lot. Steve is a pretty stoic guy. He does not throw compliments around, he doesn't act silly, he doesn't recount his childhood. What he does - he keeps us first in his thoughts and his deeds. He works his butt off at his job to make sure he can provide for us and just last week he received yet another award for his commitment to his work. At this point, he has a wall of them. For all his hard work and effort at his job, he has still managed to be a big part of our family. He does a good chunk of the cooking and is home nearly every night before the kids go to bed. He brings Zach to school, takes Sophia to soccer practice, and occasionally grocery shops.
I know that my heart is that of a mother, and I feel the urge to foster and grow my children. I also know that a father's heart is different, and the need to protect, provide and strengthen is on his shoulders. The world can be cruel, and I am sure that is one of the biggest concerns that Steve has, people being cruel to his children. Indeed, before we ever had children, let alone one with a disability, Steve was concerned about this. Steve and I are geeky sensitive types. This pretty much can make you a loser in a world where we have witnessed people laugh at other peoples pain, insecurities, weaknesses, failures. Steve is an incredibly capable person. He makes things happen that others can't. He is very smart, hardworking, and caring. I have always felt he could accomplish great things with this eclectic combination and he has. Steve is not the huggy touchy type, he doesn't say a lot, but he is hugely demonstrative in his commitment to his family and his obligations as a father.
Both of our fathers are no longer with us. This is hard for us. No one to show us how to swap out a faucet, play ball with the kids, all those grandfathery sort of things. I am sure Steve misses his Dad as much as I miss mine. We sure could use them. Sophia has begun to ask a lot of questions about her grandfathers. I can speak only for my Dad when I say that he sure would have gotten a kick out of her. And she sure has missed out on meeting a terrific guy.
I lost another father in my life about 2 years ago. The priest that married Steve and I was my childhood priest. He was very special to me and many others. When I lost my Dad, Father Champlin's sermons took the place of the words of wisdom my father once delivered. Steve enjoyed him as much as I did. I remember one of father's sermons where he asked people what a heart looked like. Some gave the symbolic description of red symmetrical shape, others thought of the more physical muscle with valves and ventricles. Father Champlin held up another representation; a donut. He said that the desire for love is filled through our relationships to others, and fills the donut and tightens that hole. We pursue closing that hole with friendships, marriage, and children. As much as we love others, and are loved by others, that hole never closes. He went on to explain that the hole can only be filled with our relationship to the Divine. When he died, that hole opened up a bit.
And last night, I said my farewells to yet another father. Father Michael, the priest who said the prayer service for Zach, will be leaving for a new parish where he will have his first chance at pastorship. He had dinner with us last evening. This has been pretty difficult for me as I am loosing my spiritual advisor through this journey. I also feel like Team Zach is down one right now.
I am grateful to each of these men and their contributions to our family. I am sad at the losses endured when they went away, yet grateful that they were once in our lives. I hope each of these men know what they mean to us. I hope that Steve knows that our lives are better because of his dedication to us and we are so happy to have him as the rock in our foundation.
Steve was given the mundane presents of sports socks, a lunch box and a new cover for his grill - and the extra special surprises of a pencil holder with pencils from Zach and a coupon book from Sophia. The coupons included one for a hug and one for helping with the dishes (although she mentioned that she would need help with the dishes.) These little surprises put a smile on my face. I realized there are no gifts great enough for Steve.
I don't really talk too much about our relationship. It is strained for sure. But I know as much as it is strained, he is doing the best he can, and it actually is quite a lot. Steve is a pretty stoic guy. He does not throw compliments around, he doesn't act silly, he doesn't recount his childhood. What he does - he keeps us first in his thoughts and his deeds. He works his butt off at his job to make sure he can provide for us and just last week he received yet another award for his commitment to his work. At this point, he has a wall of them. For all his hard work and effort at his job, he has still managed to be a big part of our family. He does a good chunk of the cooking and is home nearly every night before the kids go to bed. He brings Zach to school, takes Sophia to soccer practice, and occasionally grocery shops.
I know that my heart is that of a mother, and I feel the urge to foster and grow my children. I also know that a father's heart is different, and the need to protect, provide and strengthen is on his shoulders. The world can be cruel, and I am sure that is one of the biggest concerns that Steve has, people being cruel to his children. Indeed, before we ever had children, let alone one with a disability, Steve was concerned about this. Steve and I are geeky sensitive types. This pretty much can make you a loser in a world where we have witnessed people laugh at other peoples pain, insecurities, weaknesses, failures. Steve is an incredibly capable person. He makes things happen that others can't. He is very smart, hardworking, and caring. I have always felt he could accomplish great things with this eclectic combination and he has. Steve is not the huggy touchy type, he doesn't say a lot, but he is hugely demonstrative in his commitment to his family and his obligations as a father.
Both of our fathers are no longer with us. This is hard for us. No one to show us how to swap out a faucet, play ball with the kids, all those grandfathery sort of things. I am sure Steve misses his Dad as much as I miss mine. We sure could use them. Sophia has begun to ask a lot of questions about her grandfathers. I can speak only for my Dad when I say that he sure would have gotten a kick out of her. And she sure has missed out on meeting a terrific guy.
I lost another father in my life about 2 years ago. The priest that married Steve and I was my childhood priest. He was very special to me and many others. When I lost my Dad, Father Champlin's sermons took the place of the words of wisdom my father once delivered. Steve enjoyed him as much as I did. I remember one of father's sermons where he asked people what a heart looked like. Some gave the symbolic description of red symmetrical shape, others thought of the more physical muscle with valves and ventricles. Father Champlin held up another representation; a donut. He said that the desire for love is filled through our relationships to others, and fills the donut and tightens that hole. We pursue closing that hole with friendships, marriage, and children. As much as we love others, and are loved by others, that hole never closes. He went on to explain that the hole can only be filled with our relationship to the Divine. When he died, that hole opened up a bit.
And last night, I said my farewells to yet another father. Father Michael, the priest who said the prayer service for Zach, will be leaving for a new parish where he will have his first chance at pastorship. He had dinner with us last evening. This has been pretty difficult for me as I am loosing my spiritual advisor through this journey. I also feel like Team Zach is down one right now.
I am grateful to each of these men and their contributions to our family. I am sad at the losses endured when they went away, yet grateful that they were once in our lives. I hope each of these men know what they mean to us. I hope that Steve knows that our lives are better because of his dedication to us and we are so happy to have him as the rock in our foundation.
Thursday, June 17, 2010
Mud
All day yesterday we went between rain and sunshine. It was crazy. Steve had to work late, which left Babcia, Sophia, Zach, and I to take care of business ourselves. After dinner, which involved rice, which meant it involved a huge mess, I was set to throw the kids in the tub. Zach darted from the dining room table, with me chasing and watching all the little grains of rice getting tracked through the house. uugghh
He than ran into the mudroom and gestured towards the side entrance door and said "G'outside, play". I was flabbergasted! I said "Of course we'll go outside and play!" and called for Sophia to come join us. In that moment after, he then grabbed my hand and pushed it towards his shoes, and said "shoes!" to which I responded with "Let's get shoes on!" And I promptly did so. We opened the door only to have our neighbors cute puppy run in our house adding to the craziness of the situation - of course he was hard to get out - there was food on the ground! (mostly rice) so why would he want to leave! I grabbed a few peas and got the dog out the door. Sophia came running out to play with the dogs.
It just happened that a couple of the neighbors were out for walks with their dogs and they were off their leashes. At one point, one neighbors dog mounted the other. Sophia saw this and said:
Then little Zach went on his little obstacle course. We are in the process of redoing the landscaping and painting the house - and he loves that he can hug the edge of the house without those pesky shrubs, flowers and bushes to get in the way. And then he discovered that where Daddy had pulled out a big bush there is now a big puddle. And boy did we get a bath later on.
Please click on picture below to bring you to the video.
He than ran into the mudroom and gestured towards the side entrance door and said "G'outside, play". I was flabbergasted! I said "Of course we'll go outside and play!" and called for Sophia to come join us. In that moment after, he then grabbed my hand and pushed it towards his shoes, and said "shoes!" to which I responded with "Let's get shoes on!" And I promptly did so. We opened the door only to have our neighbors cute puppy run in our house adding to the craziness of the situation - of course he was hard to get out - there was food on the ground! (mostly rice) so why would he want to leave! I grabbed a few peas and got the dog out the door. Sophia came running out to play with the dogs.
It just happened that a couple of the neighbors were out for walks with their dogs and they were off their leashes. At one point, one neighbors dog mounted the other. Sophia saw this and said:
"Those dogs are getting all friendshipy"
Then little Zach went on his little obstacle course. We are in the process of redoing the landscaping and painting the house - and he loves that he can hug the edge of the house without those pesky shrubs, flowers and bushes to get in the way. And then he discovered that where Daddy had pulled out a big bush there is now a big puddle. And boy did we get a bath later on.
Please click on picture below to bring you to the video.
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| From Flix |
Monday, June 14, 2010
Reading Revelations
There are only so many days that you have in this life. There are only so many chances you have to do what you really want to do. The clock is ticking constantly in our world, and quite often we choose to ignore it, putting things off until another day. Although I try not to reference it, there is the additional clock that early diagnosis of autism has put into our brain. Some research has indicated that treatment has the best results when provided before the age of 5. Tick tick tick tick. When asked his age I say 3 and a half. But in the back of my mind I see the days in the months; I know it is 16 and a half months until he is five. Tick tick tick.
This is the pressure of having a young child with autism. I have read various reports that indicate that children can make tremendous strides even after that age. In fact, I have read kids whose parents finally find an effective treatment when they are as old as 13, and they become able to read and write or even speak. An interesting story is that of Sue Rubin who was diagnosed at age 4 as severely autistic and retarded. She lived in her autism bubble for years. At age 13, she was introduced to Facilitated Communication where she went on to learn how to type, and graduated high school with honors. She is non-verbal and can function independently. I believe she is currently in college. I think FC has a limited audience in those who it can help, but it appears to have made a difference for her. As nice as these few stories are, it still hasn't assuaged the pressure; more research has indicated the younger the better.
Tick tick tick. So there is a pressure to get the most effective treatment possible for Zach prior to his turning 5. Is his school the best option for this? What is working? What isn't? Who can get the most out of Zach? Who isn't? My mother used to tell me that her grandmother used to say to her: "Little children, little problems; big children, big problems." I see how this makes sense with Sophia. As she gets older, her universe gets larger and brings with it the problems of the world. But Zach's issues are large - autism has thrust him into this larger universe usually left until adulthood - therapists, social workers, schools, doctors, lawyers, government, policies, laws. Blek.
I had the opportunity to hear the director from the Yale Child Study Center speak on education and children with ASD. It was a tremendous opportunity that I am completely grateful for. As someone pointed out, he was one of the first professionals she had ever heard, when speaking about kids on the spectrum, to refer to many of them as smart and very teachable. It was very motivational to say the least. I came out of the conference energized for sure. He indicated that out of a group of 8 children that he worked with several years ago, 5 went on to pass every one of their regents exams in high school! He mentioned that one girl was even in all-state chorus. But the thing I found most exciting was his emphasis that all the kids had autism "with a capital A" meaning not PDD-NOS, not Aspergers or High Functioning Autism. They were all classically autistic - previously referred to as Kanner's syndrome. The 5 hours flew by. As I looked around the room, I realized that out of the few parents there, I was likely the only one that was accompanied by their therapist. In fact, she was the only BCBA in the room. I realized I did have something to be grateful for right then and there.
But while this energized me to some degree, the pressure has actually mounted because of this. I have been neglecting some things about Zach's programs out of exhaustion and not wanting to be obtrusive or confrontational. I know I am no expert, but I can see some clear differences between what is recommended for kids like Zach and what he is receiving. It is up to me to see what I can rectify. This is going to be a lot of work.
Tick tick tick. Is this really how I want to spend my life? Ummm.... no. If I were to die tomorrow, would I be happy with what I was leaving. Ummm..... no.
I make sure to have moments to treasure. One of these is observing Sophia flourish. I watched Sophia get on the bus this morning as I do all mornings, and I felt joy in watching her independently walking to the bus, backpack on her back, smile on her face, ready to face whatever. And then my heart grew heavy. How can this instance bring me joy and sorrow at the same time? The juxtaposition of her brother. I so want Zachy to be able to do the same.
My little girl appears to be doing well. I met with her school psychologist, aware of my concerns, who said she has no indication that there are any problems with Sophia at school. I will be meeting with Sophia's teacher next week to discuss her future and what the expectations will be in first grade. But along with Sophia's development, I also am concerned with her happiness. That is one of the things I want in my life - to cherish my children, both of them. I made a point that Steve and I were there a few weeks ago at her school birthday party. (They were celebrating summer birthdays in June) and I signed up for a read to the class opportunity. I have not been in Sophia's class once all school year with the exception of these two events and one open house and one parent/teacher conference.
Can you believe I was actually suffering from stage fright? You should have seen me with piano recitals years ago! (I used to barf my brains out) And you wonder why I never continued on with that music major... Anyhow, I brought three of my favorite books for the class, "Diary of a Worm", "Skippyjon Jones" and "The Magic School Bus: Waterworks". As I read the first book - I felt like I was doing pretty good - they seem engaged and interested. The second book was a bit longer, but my mangled Spanish and Mexican accent kept them mostly engaged. The third book I was going to have to use another tactic - so I laid heavy on the eye contact. And something did catch my eye. Amidst the middle of this crowd of kindergarteners sat a little girl in a dress and... well... no underwear. It took everything I had not to react and to keep on reading. At least I know that I am not going to lose the mother of the year award this year to this mom; I have managed to get underwear on both kids prior to leaving the house so far all this year. I got in my car to leave, and I laughed so hard, like I hadn't in such a long time.
Glad I took the time to be with my daughter. The Divine even threw in a laugh for doing the right thing and taking the moment to appreciate my daughter.
This is the pressure of having a young child with autism. I have read various reports that indicate that children can make tremendous strides even after that age. In fact, I have read kids whose parents finally find an effective treatment when they are as old as 13, and they become able to read and write or even speak. An interesting story is that of Sue Rubin who was diagnosed at age 4 as severely autistic and retarded. She lived in her autism bubble for years. At age 13, she was introduced to Facilitated Communication where she went on to learn how to type, and graduated high school with honors. She is non-verbal and can function independently. I believe she is currently in college. I think FC has a limited audience in those who it can help, but it appears to have made a difference for her. As nice as these few stories are, it still hasn't assuaged the pressure; more research has indicated the younger the better.
Tick tick tick. So there is a pressure to get the most effective treatment possible for Zach prior to his turning 5. Is his school the best option for this? What is working? What isn't? Who can get the most out of Zach? Who isn't? My mother used to tell me that her grandmother used to say to her: "Little children, little problems; big children, big problems." I see how this makes sense with Sophia. As she gets older, her universe gets larger and brings with it the problems of the world. But Zach's issues are large - autism has thrust him into this larger universe usually left until adulthood - therapists, social workers, schools, doctors, lawyers, government, policies, laws. Blek.
I had the opportunity to hear the director from the Yale Child Study Center speak on education and children with ASD. It was a tremendous opportunity that I am completely grateful for. As someone pointed out, he was one of the first professionals she had ever heard, when speaking about kids on the spectrum, to refer to many of them as smart and very teachable. It was very motivational to say the least. I came out of the conference energized for sure. He indicated that out of a group of 8 children that he worked with several years ago, 5 went on to pass every one of their regents exams in high school! He mentioned that one girl was even in all-state chorus. But the thing I found most exciting was his emphasis that all the kids had autism "with a capital A" meaning not PDD-NOS, not Aspergers or High Functioning Autism. They were all classically autistic - previously referred to as Kanner's syndrome. The 5 hours flew by. As I looked around the room, I realized that out of the few parents there, I was likely the only one that was accompanied by their therapist. In fact, she was the only BCBA in the room. I realized I did have something to be grateful for right then and there.
But while this energized me to some degree, the pressure has actually mounted because of this. I have been neglecting some things about Zach's programs out of exhaustion and not wanting to be obtrusive or confrontational. I know I am no expert, but I can see some clear differences between what is recommended for kids like Zach and what he is receiving. It is up to me to see what I can rectify. This is going to be a lot of work.
Tick tick tick. Is this really how I want to spend my life? Ummm.... no. If I were to die tomorrow, would I be happy with what I was leaving. Ummm..... no.
I make sure to have moments to treasure. One of these is observing Sophia flourish. I watched Sophia get on the bus this morning as I do all mornings, and I felt joy in watching her independently walking to the bus, backpack on her back, smile on her face, ready to face whatever. And then my heart grew heavy. How can this instance bring me joy and sorrow at the same time? The juxtaposition of her brother. I so want Zachy to be able to do the same.
My little girl appears to be doing well. I met with her school psychologist, aware of my concerns, who said she has no indication that there are any problems with Sophia at school. I will be meeting with Sophia's teacher next week to discuss her future and what the expectations will be in first grade. But along with Sophia's development, I also am concerned with her happiness. That is one of the things I want in my life - to cherish my children, both of them. I made a point that Steve and I were there a few weeks ago at her school birthday party. (They were celebrating summer birthdays in June) and I signed up for a read to the class opportunity. I have not been in Sophia's class once all school year with the exception of these two events and one open house and one parent/teacher conference.
Can you believe I was actually suffering from stage fright? You should have seen me with piano recitals years ago! (I used to barf my brains out) And you wonder why I never continued on with that music major... Anyhow, I brought three of my favorite books for the class, "Diary of a Worm", "Skippyjon Jones" and "The Magic School Bus: Waterworks". As I read the first book - I felt like I was doing pretty good - they seem engaged and interested. The second book was a bit longer, but my mangled Spanish and Mexican accent kept them mostly engaged. The third book I was going to have to use another tactic - so I laid heavy on the eye contact. And something did catch my eye. Amidst the middle of this crowd of kindergarteners sat a little girl in a dress and... well... no underwear. It took everything I had not to react and to keep on reading. At least I know that I am not going to lose the mother of the year award this year to this mom; I have managed to get underwear on both kids prior to leaving the house so far all this year. I got in my car to leave, and I laughed so hard, like I hadn't in such a long time.
Glad I took the time to be with my daughter. The Divine even threw in a laugh for doing the right thing and taking the moment to appreciate my daughter.
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