A few weeks ago, a friend had us over to swim at her house. We have spent some time over at her house this past month, and the kids swimming skills have certainly increased while doing it.
My friend is a single parent. I have found this event to be so commonplace, that I don't think much of it. And, well, I should.
Well, Zach is quite the little swimmer let me tell you. He loves to put his face in the water and practices holding his breath as long as he can. He kicks up a storm. He has no problem jumping in the deep end and loves to continually practice front and back floats. We have a version of the floaties that allows us to just let him have the run of a pool without worrying about him going under. And, alas, he watched his sister and even started going of the diving board. I always think of Michael Phelps' mom talking about how he was ADHD and how she could use his intensity/hyper focus to an advantage. Will I be able to do that with Zach one day?
Anyhow, on the way home Sophia asked where her son's father lived. We told her he had another home. She then asked why some mom and dads don't live together. I tried my best to explain it, as carefully as I could, but very clumsily. She went on to say that she has heard Steve and I fight, a lot, and she was concerned that it would happen to us. The breath was taken out of my lungs as if I had just fallen out of a 40 foot tree flat on my back. There was no good way to respond to this.
Marriage is tough work. Kids add stress and loads more work. Disability adds immeasurable more work and uncertainty. Dealing with the bureaucracy because of the disability is more work than it took to get the Apollo mission space bound and aggravating. Holy crud it is work.
If there is one thing I know, we must do what is best for Zach. And sometimes that means we must do what is best for the family. Sophia should not be fearing our divorce amongst the negligence she already has to deal with. Steve and I should not be in the state we are.
For a plethora of reasons we have decided to pull Zach from his school program. I am not happy in this decision, I don't think there was a perfect scenario at all. We pulled him for various reasons for him and for various reasons for our family. It was an incredibly hard decision, and has left me personally overwhelmed with emotion and a huge burden, yes I said burden, to make sure he gets some semblance of appropriate services here in the home. This is not his fault. This is not autism's fault. This is mostly the problem with those who should be the responsible parties for getting appropriate services for Zach and couldn't stand up to the plate for us.
I am on the phone or computer nearly all day trying to figure things out. I had no vacation, even though we went away, because of all the calamity with this.
As much as we have liked the people in Zach's program, and thought the program used great principles, it was not intense nor individualized enough for Zach. I often thought if Zach was either lower functioning or higher functioning it would have been perfect. We tried to work things out with the program and the school district, but although the program attempted to make modifications for us, we grew weary as the days were clicking away to when he began, and we had yet to meet personnel from the program. Steve had always wanted me to do a home program all along, and when we were basically told that our wish for Zach to have a 1:1 aid would not be able to be put into his IEP it seemed to push a button for us. The program was going to attempt to staff a position that would be almost like a 1:1, with the exception that it couldn't be written into his IEP, and it sounded great. I think the sad part about our journey into the world of special needs is realizing the necessity to have everything in writing. We have been hugely disappointed on this journey already. A few well intentioned people have made promises that they were unable to keep. And several people on the sly have made promises they never meant to keep. Because of this, we are very gun shy to trust anyone without things in writing. We need to be able to point to something that shows we all agreed to something. We just couldn't be assured that this was going to happen. We need that legal recourse
When we pulled Zach from his school program, we had made prior calls to therapists and agencies to see if we would have a program similar to his school program that could be run from home. This is an extraordinary measure - the school district is responsible for procuring services, but we wanted to help the process along. Well, we have managed nothing for the most part, and although it might have been lack of skill that in the end got in the way, it wasn't lack of trying. People who are in the position to help us are not willing to go the extra mile to do so. That is the hardest part for me to figure out. If I was in the position to help someone out - and I knew I could make a difference in a child's life, I would bend over backwards. In fact, I have done that not only for my own children but for some of the families who I have helped advocate for. And it isn't even my job!
I have had people tell me they want to help us - I tell them what we need help with, they then back away. I offer money and am told they don't want the money - they aren't in it for the money. Sounds unbelievable, right? The truth is, they don't want to help either, they just wanted to hear themselves say they were going to help. Wanting to do something and actually doing something are very different things. The truth is I offer money to everyone who helps us because the level of work needed for Zach is hard. It is tiring. It is lonely. It doesn't get you a lot of praise. It can feel futile at times and let's not forget it can be gross at times. But it's what needs to be done. We all need motivators in our lives to help us get through the tough stuff.
I am saddened by not sending Zach to school. The school had a nice program, it just wasn't right for the level of intensity and individualization he needed. On top of missing some of the great professionals that we had to work with, I believe he liked it. Do you know how hard it was to take something like that away from him? It's kind of like all the food we cannot let him have because we know it isn't right for him. I want to give him things that he wants of course, but I have to deny him those things for his own good. I just wish I didn't have to deny him so much.
Having Zach home has lessened the stress around the house. We are no longer wondering what is going on at school. I feel as though I can follow through with what I should be doing with him better. We don't have to worry about him getting food he should not have. Steve is able to concentrate more on work since he is not helping in the transportation of Zach to school and helping prep breakfasts and lunches.
For me, personally, things have become more stressful. Getting him the appropriate services is extremely difficult. But I keep on thinking that one day I will be glad we did it. He has another 13 years to enjoy the school experience. This does allow some more free time for just him and me, and I look forward to taking advantage of that. I am hoping that Steve and I will eventually be less stressed out, and Sophia will not have to worry that the constant tension in the house means that Momma and Daddy are going to live in separate houses.
Zach has made progress. He is saying more spontaneous phrases. He is learning to ride his tricycle independently. He can identify more objects than before. He is sitting better for stories and helping to point out pictures in books. He is learning to get himself dressed and undressed. Sleep is another story for another post. We are still working on potty training, but can at least claim that he is schedule trained for peeing. I will take that victory, but I won't retreat, I will forge ahead through the smoke cloud.
One day I will be able to breath more freely again.
Sunday, September 12, 2010
Wednesday, September 1, 2010
Quickie
Every time the blog goes blank is usually a sign of one of the following:
1) I am doing my very best to manage through a rough patch.
2) Things are hopping.
3) I have taken up a new hobby such as underwater cat grooming and am totally engrossed.
4) I have taken a Latin lover and am enjoying the Caribbean with my new found friend.
OK. Well, probably not 3. Definitely not 4.
Emotional times for me right now. I have started to write several times in the past few weeks but can't seem to push a post out.
There is vacation, activities, school, upcoming appointments, and changes.
I am, in all likelihood, in need of Valium, but lack the backbone to take one let alone the wherewithal to get one.
I ask for all my readers of faith to send prayers and for all my readers who are not to think of us during this time. It is, for some reason, a very turbulent time for us, even though I am feeling confident all will be well in the end. I promise a good post with the next few days.
If nothing else I will make sure to get pics up. I am sure you would all rather see my beautiful children anyways over reading my revealing yet self-absorbed, grammar faulting, typo laden, incontinent ramblings.
1) I am doing my very best to manage through a rough patch.
2) Things are hopping.
3) I have taken up a new hobby such as underwater cat grooming and am totally engrossed.
4) I have taken a Latin lover and am enjoying the Caribbean with my new found friend.
OK. Well, probably not 3. Definitely not 4.
Emotional times for me right now. I have started to write several times in the past few weeks but can't seem to push a post out.
There is vacation, activities, school, upcoming appointments, and changes.
I am, in all likelihood, in need of Valium, but lack the backbone to take one let alone the wherewithal to get one.
I ask for all my readers of faith to send prayers and for all my readers who are not to think of us during this time. It is, for some reason, a very turbulent time for us, even though I am feeling confident all will be well in the end. I promise a good post with the next few days.
If nothing else I will make sure to get pics up. I am sure you would all rather see my beautiful children anyways over reading my revealing yet self-absorbed, grammar faulting, typo laden, incontinent ramblings.
Friday, August 13, 2010
What Get's Me Through: Part 1 - The Gift of Time
I am a boatload of stress. Some of you in my shoes understand why. In all likelihood, some of you think I am overreacting. I can honestly tell you that if I see Zach initiating verbal communication with me and others on a regular basis, my stress load will be divided almost infinitely. OK not really, but it will go down at least 50%. I promise.
I tried to offer my friends with children some perspective: you worry about development a ton in your kids. You compare them on occasion. You may have young children mother regret- you know that 45 minutes you take to drink a cup of coffee and facebook your friends? I know a chunk of you feel bad mommy guilt for sticking the kids in front of TV during this time. You think you should have done something more engaging with your child, that because of this regular indulgence you have taken (that when dealing with your kids all day, may be the only thing keeping you sane) in some level of consciousness makes you feel that he might not take that AP class one day resulting in community college over that private school, or worse, perhaps much worse, your nightmare, your child doling out fries and burgers at MCDs or BK. Oh the horror!!
Well guess what, your nightmare is my dream. If Zach can one day communicate and have the self care skills to manage a job at a fast food restaurant, that would be a major victory. Now can he do better than that? I am not going to lie, I am shooting for the stars; I want that college education and professional job for him. I want as much that is normal to me for him as possible. Why? Is it social status or money? Not really. My two biggest concerns for Zach: I desperately want to relate/connect with him and I want to make sure he is safe and capable of defending himself in a world that can be hostile.
Anything is possible. (Hope) What is going to be is such a mystery. (Fear)
I am a girl with a plan. I can take mystery to some extent, but I want to feel like I have some control over my children's future. With Zach, I feel like it is much harder to feel like I am making that positive contribution. Stress. Every decision we make now feels like it might impact the quality of his life to such an extent that it is the most amount of pressure I have ever felt. So I have written down some of the things that help me to manage through my day without anti-depressants (at least for now), without anti-anxiety med (again, at lest for now), and without turning a complete nervous breakdown (although little mini ones are allowed.)
So I have begun to write a series to help me establish in my upper conscience what is helpful and what isn't: what I am thankful for, what helps get me through the day
Today, my first topic is the gift of time, the #1 offering someone can make to help us out. The gift of time comes in a couple of different forms. Simple playdates with my kids is a really big one. Having us over for dinner is another. Coming to the social events we host is yet another. Calling me up and making me leave the house to do something fun is right up there too.
Playdates with friends is critically important to us - some with kids who are diagnosed, some who are not.
I have a friend whose son is doing well and has a smile that lights up the room. She has always been so gracious to me and my husband, inviting us for playdates or excursions. This woman always is in action , thinking of her son and his diagnosis, referring to professionals, other families, taking classes, signing up for programs, and in the free time, she works with her son. He has made remarkable progress. She is a single parent with no college education, yet I have seen her efforts and she is as intelligent in her decisions as someone with a PhD in child psychology could be. She has impressed me for sure and given me the desire to fight and not care what others think.
Another friend has a son 6 months younger than Zach. They have gone all out in their interventions, biomedical and therapy, and there son recently tested as having no deviation in skills from typical peers. This family has scored a victory for sure, but has also shown me, once autism enters the picture, there is always this fear that doesn't go away. Although he is so capable, Mom cannot get over that he could once again regress. She also shows little fear when it comes to keeping her family operating in this world. She constantly challenges her family taking them out into public spaces with strangers. She is a fierce mother for sure!
Another friend has an older non-verbal son with an ASD. She is stays in contact and frequently tries to get me out of my shell. She is one of the most positive people I have ever met and I am hoping that one day some of that will rub off on me. In the face of adversity, she keeps on smiling and I love that about her. She invites our family over to dine or swim with her and her son. She tempts me with social occasions that I tend to shy away from.
There are those friends who don't have children with an ASD - but keep us in their social repertoire nonetheless. I have a friend who recently had us up to a camp they rented in the Thousand Islands region - and the kids loved it. And another friend with three beautiful daughters who has watched Sophie on occasion, however, recently broke my heart by announcing that they are moving to Albany.
There are those of you who read and comment on my blog, possibly offended at times, but show support nonetheless. There are my facebook friends of all varieties that chat with me and comment on my status.
Some members of Steve's and my family have made some efforts too. It is hard for some because they live far away. Others have disappointed, but I love them anyhow. I am always amazed at how hurt I am when my family doesn't show up to events that I host. I think that I am sometimes oversensitive. I have a hard time shrugging these things off. But I think I have come to some realization that my priorities in life and theirs are different, and I need to find a way, put up some boundaries, so that our differences don't cause us to totally be toxic to one another. Some people would say to cut these people out of my life, but the fact is, I doubt I ever will. It's not my personality. I love them and need to at least know of their journey through life although we might not be intimate the way I would like.
A neighbor talked to me the other night for an hour. She was so sweet and we laughed. She does not know of Zach's dx. She is busy with four kids of her own. She keeps on pushing me to go out running with her and a few other women in the neighborhood. I know she is right. Trying to make it fit in the schedule is another topic. I like that she hounds me about this.
There are likely several other items I could mention, but I think you get the drift. Acknowledging my children's or my presence is a gift more valuable to us than just about anything else. Thanks to all of you who took a moment of time out of your busy schedules to think of us, send us a note, give us a call, send an email, make a comment, etc let us know that you care.
This experience has taught me this:
Zach has given me the courage to deal with things I normally would have avoided all together: take on bureaucracy, ask for help, stand up for what I know is right. I am so grateful for those of you on Team Zach which keep me going on days when I think I have nothing left.
I tried to offer my friends with children some perspective: you worry about development a ton in your kids. You compare them on occasion. You may have young children mother regret- you know that 45 minutes you take to drink a cup of coffee and facebook your friends? I know a chunk of you feel bad mommy guilt for sticking the kids in front of TV during this time. You think you should have done something more engaging with your child, that because of this regular indulgence you have taken (that when dealing with your kids all day, may be the only thing keeping you sane) in some level of consciousness makes you feel that he might not take that AP class one day resulting in community college over that private school, or worse, perhaps much worse, your nightmare, your child doling out fries and burgers at MCDs or BK. Oh the horror!!
Well guess what, your nightmare is my dream. If Zach can one day communicate and have the self care skills to manage a job at a fast food restaurant, that would be a major victory. Now can he do better than that? I am not going to lie, I am shooting for the stars; I want that college education and professional job for him. I want as much that is normal to me for him as possible. Why? Is it social status or money? Not really. My two biggest concerns for Zach: I desperately want to relate/connect with him and I want to make sure he is safe and capable of defending himself in a world that can be hostile.
Anything is possible. (Hope) What is going to be is such a mystery. (Fear)
I am a girl with a plan. I can take mystery to some extent, but I want to feel like I have some control over my children's future. With Zach, I feel like it is much harder to feel like I am making that positive contribution. Stress. Every decision we make now feels like it might impact the quality of his life to such an extent that it is the most amount of pressure I have ever felt. So I have written down some of the things that help me to manage through my day without anti-depressants (at least for now), without anti-anxiety med (again, at lest for now), and without turning a complete nervous breakdown (although little mini ones are allowed.)
So I have begun to write a series to help me establish in my upper conscience what is helpful and what isn't: what I am thankful for, what helps get me through the day
Today, my first topic is the gift of time, the #1 offering someone can make to help us out. The gift of time comes in a couple of different forms. Simple playdates with my kids is a really big one. Having us over for dinner is another. Coming to the social events we host is yet another. Calling me up and making me leave the house to do something fun is right up there too.
Playdates with friends is critically important to us - some with kids who are diagnosed, some who are not.
I have a friend whose son is doing well and has a smile that lights up the room. She has always been so gracious to me and my husband, inviting us for playdates or excursions. This woman always is in action , thinking of her son and his diagnosis, referring to professionals, other families, taking classes, signing up for programs, and in the free time, she works with her son. He has made remarkable progress. She is a single parent with no college education, yet I have seen her efforts and she is as intelligent in her decisions as someone with a PhD in child psychology could be. She has impressed me for sure and given me the desire to fight and not care what others think.
Another friend has a son 6 months younger than Zach. They have gone all out in their interventions, biomedical and therapy, and there son recently tested as having no deviation in skills from typical peers. This family has scored a victory for sure, but has also shown me, once autism enters the picture, there is always this fear that doesn't go away. Although he is so capable, Mom cannot get over that he could once again regress. She also shows little fear when it comes to keeping her family operating in this world. She constantly challenges her family taking them out into public spaces with strangers. She is a fierce mother for sure!
Another friend has an older non-verbal son with an ASD. She is stays in contact and frequently tries to get me out of my shell. She is one of the most positive people I have ever met and I am hoping that one day some of that will rub off on me. In the face of adversity, she keeps on smiling and I love that about her. She invites our family over to dine or swim with her and her son. She tempts me with social occasions that I tend to shy away from.
There are those friends who don't have children with an ASD - but keep us in their social repertoire nonetheless. I have a friend who recently had us up to a camp they rented in the Thousand Islands region - and the kids loved it. And another friend with three beautiful daughters who has watched Sophie on occasion, however, recently broke my heart by announcing that they are moving to Albany.
There are those of you who read and comment on my blog, possibly offended at times, but show support nonetheless. There are my facebook friends of all varieties that chat with me and comment on my status.
Some members of Steve's and my family have made some efforts too. It is hard for some because they live far away. Others have disappointed, but I love them anyhow. I am always amazed at how hurt I am when my family doesn't show up to events that I host. I think that I am sometimes oversensitive. I have a hard time shrugging these things off. But I think I have come to some realization that my priorities in life and theirs are different, and I need to find a way, put up some boundaries, so that our differences don't cause us to totally be toxic to one another. Some people would say to cut these people out of my life, but the fact is, I doubt I ever will. It's not my personality. I love them and need to at least know of their journey through life although we might not be intimate the way I would like.
A neighbor talked to me the other night for an hour. She was so sweet and we laughed. She does not know of Zach's dx. She is busy with four kids of her own. She keeps on pushing me to go out running with her and a few other women in the neighborhood. I know she is right. Trying to make it fit in the schedule is another topic. I like that she hounds me about this.
There are likely several other items I could mention, but I think you get the drift. Acknowledging my children's or my presence is a gift more valuable to us than just about anything else. Thanks to all of you who took a moment of time out of your busy schedules to think of us, send us a note, give us a call, send an email, make a comment, etc let us know that you care.
This experience has taught me this:
“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
Zach has given me the courage to deal with things I normally would have avoided all together: take on bureaucracy, ask for help, stand up for what I know is right. I am so grateful for those of you on Team Zach which keep me going on days when I think I have nothing left.
Monday, August 9, 2010
Potty Training Bootcamp
****** 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!
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!
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.
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