Steve and I were pretty nervous. We have been fibbed to and surprised so many times by those who are at the helm of providing services to us, that we just pretty much expect anything goes during these meetings.
Today's CPSE was uneventful. Basically we are status quo until January. Then they will "evaluate" home based stuff. I interpret this as them basically saying that they will likely fight us on continuing our ABA therapist at home which just happens to correlate with the New York state insurance reform S7000 initiation date. Coincidence?
S7000 is a new bill that has been signed off on by both houses in the state legislature. Before I read the bill, I felt there was a problem. I didn't have to know the content. It was published and put to a vote within 3 weeks after publication. It has many, many sponsors from within the senate. It is backed by only one group - Autism Speaks and denounced by many other autism groups . This just sounds like politics at its best to me. As for the content - some things were pretty glaring there too. Most notably, it has taken out all caps and it has managed to require the involvement of four different government agencies approval in order to get treatments covered.
I have no idea if it will be ineffectual or not. I pray that the naysayers are wrong, but my gut is telling me "uh-oh, I think we just got shafted again." I haven't been following any of this too closely. Frankly, I cannot take it right now. Something has told me to lay low right now. And so I am.
We got through another day. Zach is still my boy and still smiles. I have begun to pray a lot again.
After a mental reset, I will take a deep breath and get ready for January. Now if I could just find my law books! I lent them out and have no idea to who. Maybe I will add them to my amazon.com wish list and see if I have any Fairy Godmother's out there.
Friday, March 26, 2010
Wednesday, March 24, 2010
Tiptoe Down the Driveway
We have had unusually beautiful weather this March in Syracuse. The warm temperatures and sunny skies prompted people to clean their yards earlier than I can recall. Is also has made National Grid (our local gas and electricity supplier) charge a fee to consumers for unusual weather (I kid you not), thus promoting their alias, National Greed.
With all this lamb type weather, we finally received two days of lion - with some rain on Monday, and rain/snowlike slush yesterday. As I watched Sophia walk down the drive way to the bus, something caught my eye. She was toe walking all the way down the driveway. My eyes must have been the size of saucers as I have never her seen her toe walk so much. I was concerned throughout the day that her sensory issues may have been exacerbated by something - stress or maybe even the weather pattern (was there really something to that Cornell rain research??)
When she came home, she ran across the grass to greet me, with a semi-normal heel-toe pattern. As we drove off to retrieve our beloved Zach from school, I asked Sophia if she knew why she was tip toeing down the drive way: "Are you tired? Were your ears bothering you?" To which she responded: "Did you see all those worms in the drive way!? GROSS."
Autism played another trick on me. And it isn't even April Fools.
With all this lamb type weather, we finally received two days of lion - with some rain on Monday, and rain/snowlike slush yesterday. As I watched Sophia walk down the drive way to the bus, something caught my eye. She was toe walking all the way down the driveway. My eyes must have been the size of saucers as I have never her seen her toe walk so much. I was concerned throughout the day that her sensory issues may have been exacerbated by something - stress or maybe even the weather pattern (was there really something to that Cornell rain research??)
When she came home, she ran across the grass to greet me, with a semi-normal heel-toe pattern. As we drove off to retrieve our beloved Zach from school, I asked Sophia if she knew why she was tip toeing down the drive way: "Are you tired? Were your ears bothering you?" To which she responded: "Did you see all those worms in the drive way!? GROSS."
Autism played another trick on me. And it isn't even April Fools.
Tuesday, March 23, 2010
Monday Naps
One of the issues I have been struggling with is sort of nothing to do with autism. It's naps. My kids BOTH take them. And I'll be honest here, I would too if I could. Sleep oh glorious sleep. As Sophia is 5 and in kindergarten, I am guessing it is time. Having half day kindergarten (which I am now not a big fan of) allows her to occasionally take a nap. I would say at this point she is taking them a few times a week. I haven't forced her to give them up, but have been watching as they slowly wither away.
Now initially, I was excited about half day kindergarten. In my dream world, I had typically developing kids with no special anything, and I envisioned Sophia getting off the bus, feeding my children typical American lunches such as peanut butter and jelly sandwiches on white bread with a banana and a glass of milk, and the dashing off to the science museum, zoo, or park. At the science museum/zoo/park, they would become exhausted, fall asleep on the way home, I would tuck them in for an hour and a half nap while I made a gourmet meal for all to enjoy that evening when father came home. POOF. Pretty sad that my dreams are so pedestrian that it would make a nun yawn.
Well, yesterday, we had an exciting packed day. The itinerant therapist would be coming late, which gave me time to run errands after we drove all over h*ll's half acres (also known as Syracuse) to pick Zach up from school. As I hopped in the car with Sophia after forcing her to down her lunch in 3 minutes so that we wouldn't be late in picking Zach up, the car wouldn't start. I tried and tried again. The key would not turn! I go to call Steve for help, and realize my cell phone has died. Uuggh. I run in to the house realizing that the minutes are clicking away and that any moment that passes is a moment that brings me closer to being late to pick up my dear son. I panic. I grab the wireless phone and back to the garage I go. I dial and Steve thankfully picks up. In my panic, I rudely explain the problem and in my anxiety, I blame him for it and all things bad in the world. He (trying to be patient with me becuase he knows how I get) tells me he will pick Zach up from school and meet me at home. This enrages me - didn't he know that the therapist would be late and that this was my day to run errands on the side of town where Zach's school is?
In the end, there was no choice. I sat there in my unfavored vehicle (a minivan is pretty much my worst nightmare in terms of trying to be cool as well as driving something that often feels like a tank in a slightly smaller profile, not to mention the customized factor of having a hole in the rear bumper, scratches down the left side from our too small for 2 cars garage, and a fender that basically looks like a crunched up soda can.) As I sat there contemplating what further torture awaited me, a little voice in the far back seat says "Who were you talking to and why aren't we moving?" SNAP. I am thankful for one thing, I didn't, in my tirade, curse out the world as I have been recently frequently doing in front of my young, sweet daughter.
As I give the car one more try, it starts as if nothing was ever a problem. The darned vehicle knows I never loved it, and so it taunts me, I tell you, it really taunts me. I call Steve to tell him the car started, but I now have 15 minutes to do a 25 minute drive. He tells me he is already on his way, he'll meet me there and I can go forth with my day.
As I approach Zach's school, I realize what it must be like for Steve to get these panic/irate phone calls in the middle of his professional work day. I am embarrassed by my behavior, but I say nothing. I look for disdain in his eyes, but there is none. He is probably too tired. Or perhaps he understands me now, and that it isn't him, it's our current situation that drives me into hysterics from time to time. Or perhaps, I just always have been a pain in the azz, he accepts me anyhow, and I just realized this, so quit blaming our "situation" for my occasional lunacy.
Off to errands with Sophia and Zach in tow I go. Is it the said science museum, or park? No, we are going to the ramshackle discount vitamin store to go pick up $180 worth of supplements that the doctor has recommended. The place is so dingy, that I allow the kids to touch nothing, and not out of fear that they will brake something, but more so that their tetanus shots didn't take. The place is a warehouse for an internet site, and it is very interesting to see the underpinnings behind the clean and organized website they have. I wonder if amazon.com's warehouse would look as bad. Probably not. Everything I purchase is double sealed, and I check for expiration dates before I leave the parking lot for sure. In fact, one item I purchased was set to expire next month. Being that it is a 90 day supply - off I had to go back in to the hole, and with little explanation, I got my money back. I am embarrassed that I took my kids to such a place. I am sure they thought it quite an adventure. At least that is what I tell myself so as to not feel guilty.
The rest of the afternoon goes well, Sophia was invited to a friend's house to play and Zach stayed awake for his therapy. No naps. Uhh, well, until 4:45 when Zach dozed as I spoke with his therapist about how his session went. Ahh nuts. A nap this late is surely going to wreak havoc on his bedtime routine. I try, in vain, to wake him. No way. I decide a power-nap is permissable, and that is it. Forty-five minutes later I finally could arouse him out of his slumber. Ahh geesh.
I pick up Sophia from her friend's house, we arrive home, and she promptly plops herself down on our couch to which I tell her that no way now how is she going to sleep. She whines and complains, and I tell her that if she wants to go to sleep, she can go up to her bedroom. The smell of me making homemade meatballs keeps her awake as well as a promise for dessert if she eats something healthy. Steve arrives home from work at 7ish, and he is pleasantly surprised by the calmness. Children have finished dinner, and I am finishing my cooking. We decide to forgo the baths since they had one last night, we get the PJs out, and look forward to an evening just chilling watching a Disney flick, all 4 of us together with all the chores done.
Eight o'clock rolls around the phone rings. It's my mother. She's panicked. There are bugs all over her bathroom. She cannot get a hold of my sister who lives with her. I tell her I'll be right over. Those nasty words I was so good at containing earlier in the day come flying out of my mouth. I just wanted one evening with my family in peace! Steve volunteers to go over - I tell him I was so looking forward to being together as a family. We decide the kids are in their pajamas, lets just go over and see what is going on. It's a 10 minute drive, and Sophia was crying earlier that we had left her Snow White movie at Babcia's, so now we can retrieve it.
We arrive, and my sister's car sits in the driveway, glaring at me. Indeed there are some ants in the bathroom. My sister is nonchalant by the fact it is 8:15 at night and I have driven with my two young small children in their pajamas on a school night to spray raid, install some ant traps around the house and wash bathroom rugs for my Mom while she is there herself. I don't ask questions anymore about why my sister can't handle some of these things. I don't ask the obvious like "Why didn't she answer her cell phone when my Mom called?" I just don't get upset about this stuff anymore. I am numb to the fact that our lives and our chaos is taken by my family as part of my delirium. They know if they call, I will respond. It is who I am. I want to support others, help them. I just wish they understood that we are in crisis here ourselves.
In the past two years, Steve has installed a microwave and exhaust fan in my mother's kitchen which involved some custom woodworking over my mother's stove. He has also installed a new dishwasher which involved taking out part of her floor and subfloor to get the new dishwasher in. I have driven my mother cross town, researched, and helped her choose and purchase a new refrigerator. We have purchased and installed a new light fixture in her kitchen. We have installed a new sink faucet - THRICE for her kitchen. Yes thrice, because after the first one was installed, we realized the window latch got caught on the spigot. Then after the second one was installed, my mother was standing on her sink (I kid you not) in order to knock down icicles out the window over the sink, fell on the sink, and bent the spigot. I have troubleshot my mother's furnace and got it started for her after spending a cold night without heat after being called frantically int he morning while trying to get two kids off to school. I have gone shopping with her, purchased, and had to return various window treatments. These are just a few snapshots of the various house projects we have helped her with. I am glad that we did them - she deserves more than what we can offer her. But I am sort feeling like it will never end, and we just don't have it in us to do them anymore. Our life is running at 100 miles an hour, and there are not pit stops. Those few times we have to catch our breath seem to be taken up with helping others. These are the things, in conjunction with doctor and therapy appointments for her, that in conjunction to life with two small children, and AUTISM CRAZINESS have made it impossible for me to contemplate ever having a normal life with a real job that I can excel at.
I do get mad at people. I feel like I am called upon to do my share (and more then my share) at a time in our lives we don't have much to give. I have to hear how "busy" everyone is because they have jobs, their own troubles, and I really cannot stand it. If Zach had cancer, would people treat us the same way? I am sure some of it is my fault as people would likely point out, after all, I do say yes to doing things. I just don't see anyone else stepping up to the plate. Why does it feel like Zach's autism is not taken seriously? It impacts our life as much as a grave illness. This is not me being over-reactive, go out there and ask around to other parents, and to the professionals (experts and specialists) and ask them what sort of dedication and effort they recommend. This button says it all. (Thanks for sharing, Missy)
OK, RANT OVER.
I hear about people whose kids go to bed at 7:30 or 8, and I hate them. OK, not really, but I cannot figure out for the life of me how to accomplish it. I had a friend with a typical kid who told me to just get the kids to drop the nap. Sort of like the Nike slogan of "just do it". Her kids are the same age, and she said, with what felt like near scorn, they don't nap. I told my one therapist this, to which the the therapist remarked that my friend's 3 year old son didn't have days filled with 7 -9 hours of therapy, so you cannot compare. Our therapist, a mother of 4, has seen a lot of families with kids on the spectrum. I was so glad for her support in understanding just how tiring this stuff is - not just for me, or Steve, but those precious kids of ours, too.
Life will likely have naps for a while. They will fade over time. I have to face that our lives are full, and that we all need those moments of rest, even if they aren't convenient. Nothing else in our lives is convenient. Things don't go as planned more often than not. One foot in front of the other.
Now initially, I was excited about half day kindergarten. In my dream world, I had typically developing kids with no special anything, and I envisioned Sophia getting off the bus, feeding my children typical American lunches such as peanut butter and jelly sandwiches on white bread with a banana and a glass of milk, and the dashing off to the science museum, zoo, or park. At the science museum/zoo/park, they would become exhausted, fall asleep on the way home, I would tuck them in for an hour and a half nap while I made a gourmet meal for all to enjoy that evening when father came home. POOF. Pretty sad that my dreams are so pedestrian that it would make a nun yawn.
Well, yesterday, we had an exciting packed day. The itinerant therapist would be coming late, which gave me time to run errands after we drove all over h*ll's half acres (also known as Syracuse) to pick Zach up from school. As I hopped in the car with Sophia after forcing her to down her lunch in 3 minutes so that we wouldn't be late in picking Zach up, the car wouldn't start. I tried and tried again. The key would not turn! I go to call Steve for help, and realize my cell phone has died. Uuggh. I run in to the house realizing that the minutes are clicking away and that any moment that passes is a moment that brings me closer to being late to pick up my dear son. I panic. I grab the wireless phone and back to the garage I go. I dial and Steve thankfully picks up. In my panic, I rudely explain the problem and in my anxiety, I blame him for it and all things bad in the world. He (trying to be patient with me becuase he knows how I get) tells me he will pick Zach up from school and meet me at home. This enrages me - didn't he know that the therapist would be late and that this was my day to run errands on the side of town where Zach's school is?
In the end, there was no choice. I sat there in my unfavored vehicle (a minivan is pretty much my worst nightmare in terms of trying to be cool as well as driving something that often feels like a tank in a slightly smaller profile, not to mention the customized factor of having a hole in the rear bumper, scratches down the left side from our too small for 2 cars garage, and a fender that basically looks like a crunched up soda can.) As I sat there contemplating what further torture awaited me, a little voice in the far back seat says "Who were you talking to and why aren't we moving?" SNAP. I am thankful for one thing, I didn't, in my tirade, curse out the world as I have been recently frequently doing in front of my young, sweet daughter.
As I give the car one more try, it starts as if nothing was ever a problem. The darned vehicle knows I never loved it, and so it taunts me, I tell you, it really taunts me. I call Steve to tell him the car started, but I now have 15 minutes to do a 25 minute drive. He tells me he is already on his way, he'll meet me there and I can go forth with my day.
As I approach Zach's school, I realize what it must be like for Steve to get these panic/irate phone calls in the middle of his professional work day. I am embarrassed by my behavior, but I say nothing. I look for disdain in his eyes, but there is none. He is probably too tired. Or perhaps he understands me now, and that it isn't him, it's our current situation that drives me into hysterics from time to time. Or perhaps, I just always have been a pain in the azz, he accepts me anyhow, and I just realized this, so quit blaming our "situation" for my occasional lunacy.
Off to errands with Sophia and Zach in tow I go. Is it the said science museum, or park? No, we are going to the ramshackle discount vitamin store to go pick up $180 worth of supplements that the doctor has recommended. The place is so dingy, that I allow the kids to touch nothing, and not out of fear that they will brake something, but more so that their tetanus shots didn't take. The place is a warehouse for an internet site, and it is very interesting to see the underpinnings behind the clean and organized website they have. I wonder if amazon.com's warehouse would look as bad. Probably not. Everything I purchase is double sealed, and I check for expiration dates before I leave the parking lot for sure. In fact, one item I purchased was set to expire next month. Being that it is a 90 day supply - off I had to go back in to the hole, and with little explanation, I got my money back. I am embarrassed that I took my kids to such a place. I am sure they thought it quite an adventure. At least that is what I tell myself so as to not feel guilty.
The rest of the afternoon goes well, Sophia was invited to a friend's house to play and Zach stayed awake for his therapy. No naps. Uhh, well, until 4:45 when Zach dozed as I spoke with his therapist about how his session went. Ahh nuts. A nap this late is surely going to wreak havoc on his bedtime routine. I try, in vain, to wake him. No way. I decide a power-nap is permissable, and that is it. Forty-five minutes later I finally could arouse him out of his slumber. Ahh geesh.
I pick up Sophia from her friend's house, we arrive home, and she promptly plops herself down on our couch to which I tell her that no way now how is she going to sleep. She whines and complains, and I tell her that if she wants to go to sleep, she can go up to her bedroom. The smell of me making homemade meatballs keeps her awake as well as a promise for dessert if she eats something healthy. Steve arrives home from work at 7ish, and he is pleasantly surprised by the calmness. Children have finished dinner, and I am finishing my cooking. We decide to forgo the baths since they had one last night, we get the PJs out, and look forward to an evening just chilling watching a Disney flick, all 4 of us together with all the chores done.
Eight o'clock rolls around the phone rings. It's my mother. She's panicked. There are bugs all over her bathroom. She cannot get a hold of my sister who lives with her. I tell her I'll be right over. Those nasty words I was so good at containing earlier in the day come flying out of my mouth. I just wanted one evening with my family in peace! Steve volunteers to go over - I tell him I was so looking forward to being together as a family. We decide the kids are in their pajamas, lets just go over and see what is going on. It's a 10 minute drive, and Sophia was crying earlier that we had left her Snow White movie at Babcia's, so now we can retrieve it.
We arrive, and my sister's car sits in the driveway, glaring at me. Indeed there are some ants in the bathroom. My sister is nonchalant by the fact it is 8:15 at night and I have driven with my two young small children in their pajamas on a school night to spray raid, install some ant traps around the house and wash bathroom rugs for my Mom while she is there herself. I don't ask questions anymore about why my sister can't handle some of these things. I don't ask the obvious like "Why didn't she answer her cell phone when my Mom called?" I just don't get upset about this stuff anymore. I am numb to the fact that our lives and our chaos is taken by my family as part of my delirium. They know if they call, I will respond. It is who I am. I want to support others, help them. I just wish they understood that we are in crisis here ourselves.
In the past two years, Steve has installed a microwave and exhaust fan in my mother's kitchen which involved some custom woodworking over my mother's stove. He has also installed a new dishwasher which involved taking out part of her floor and subfloor to get the new dishwasher in. I have driven my mother cross town, researched, and helped her choose and purchase a new refrigerator. We have purchased and installed a new light fixture in her kitchen. We have installed a new sink faucet - THRICE for her kitchen. Yes thrice, because after the first one was installed, we realized the window latch got caught on the spigot. Then after the second one was installed, my mother was standing on her sink (I kid you not) in order to knock down icicles out the window over the sink, fell on the sink, and bent the spigot. I have troubleshot my mother's furnace and got it started for her after spending a cold night without heat after being called frantically int he morning while trying to get two kids off to school. I have gone shopping with her, purchased, and had to return various window treatments. These are just a few snapshots of the various house projects we have helped her with. I am glad that we did them - she deserves more than what we can offer her. But I am sort feeling like it will never end, and we just don't have it in us to do them anymore. Our life is running at 100 miles an hour, and there are not pit stops. Those few times we have to catch our breath seem to be taken up with helping others. These are the things, in conjunction with doctor and therapy appointments for her, that in conjunction to life with two small children, and AUTISM CRAZINESS have made it impossible for me to contemplate ever having a normal life with a real job that I can excel at.
OK, RANT OVER.
I hear about people whose kids go to bed at 7:30 or 8, and I hate them. OK, not really, but I cannot figure out for the life of me how to accomplish it. I had a friend with a typical kid who told me to just get the kids to drop the nap. Sort of like the Nike slogan of "just do it". Her kids are the same age, and she said, with what felt like near scorn, they don't nap. I told my one therapist this, to which the the therapist remarked that my friend's 3 year old son didn't have days filled with 7 -9 hours of therapy, so you cannot compare. Our therapist, a mother of 4, has seen a lot of families with kids on the spectrum. I was so glad for her support in understanding just how tiring this stuff is - not just for me, or Steve, but those precious kids of ours, too.
Life will likely have naps for a while. They will fade over time. I have to face that our lives are full, and that we all need those moments of rest, even if they aren't convenient. Nothing else in our lives is convenient. Things don't go as planned more often than not. One foot in front of the other.
Monday, March 22, 2010
OOPS!
My apologies to someone who recently commented on my blog - apparently I accidentally deleted your comment and there is no restore function - uugghh! I have altered settings so this should not be an issue in the future. Again - sorry!
Saturday, March 20, 2010
Pre CPSE Meeting
Had a meeting with Zach's team at school to discuss their report that they will present at our CPSE meeting. Oh yeah. That is sometime next week. I don't know when. I cannot find where the envelope from the school district is. Sad sad sad. This is so not the person I used to be.
CPSE is the Committee for Preschool Special Education - it's basically the reps from the school district making sure that the county is getting it's money's worth for paying for his preschool program. These meetings occur a few times a year and are part of the things that makes having kids with special needs pretty much stink. Usually everything should get nailed down during these meetings - like what sort of services and how much. But occasionally, you will think you agreed to something, you leave after cordial farewells feeling good about the outcome, a week passes, the paperwork arrives with a report that says something different than you thought you agreed to. You just never know how these things are going to work out. Bring a tape recorder.
My favorite (note sarcasm please) part is the balancing act between "he's showing progress so let's keep him in this program with the intensity level as is" to the "he is showing so much progress he doesn't need this intensity anymore". In other words, you want your kid do to well, but not too well. *sigh*
Overall, Zach is still at least 12 months behind where he should be in just about every category of academic testing - social, cognitive, fine and gross motor, and speech (all areas of speech including expressive language, receptive language, articulation, etc. ) When I read the report, I basically was pretty low for around 10 days. I could be happy about one thing, they likely would keep his services where they are. This includes keeping him signed in for a summer school program. Each of the evaluators in the report were thorough (gracious?) enough to write that Zach had issues when transitioning back to school after being out for illness or vacations. I am glad I have a team that anticipates what the county and school district would likely throw at us. This track record of transition issues suggests that a break of 2 months could be catastrophic for him. I have heard stories that other children who did not have this indicated in their records were told to go without services for a week or two, and see if there is any regression noted. I am hopeful that this is documented well enough to suffice. (Knock on wood, say a prayer, cross your fingers, whatever...)
So after struggling with trying to love Zach for the child he is, accept the autism, take each day as it comes, look at the progress he has made, I read these words, and my heart has been broken all over again. I keep on thinking about the 14 more years of going through this cycle of having to read words that talk about such things as: deficits, being behind, issues, problems, behaviors, standard deviations, delays, appropriateness, and I wonder, will I ever be able to handle this? I know I am somehow getting by, by the grace of the Almighty, but I do not feel like I am handling this, and rumors have it that it will become harder as he gets older. Is it still in my head that all is still normal? Is that why reading this report is so difficult - it is slapping me with the reality of my life? a reality that I am still fighting?
In this report there are other words, sweet and happy come to mind. You can sugar coat it all you want, it doesn't take the sting of all those other words away. He is sweet. He is still Zach. I love him. Always will.
Which brings me to the next issue so hard to get over - Sophia asked me the other days if I loved Zach more than I love her. I could easily understand why she might think this. Zach gets lots of attention, therapists coming to see him, much of my conversations are about him, my life revolves around his therapy, schooling, diet, doctors appointments, research, etc. I love both my kids so much. Some times I want to tell her that she is the only thing keeping me sane - seeing her growth, slowly adding into her independence, a complete budding flower that I merely water and fertilize once in awhile. I am not sure what the future holds for Sophia, but it looks so promising! She says she wants to be a nurse/teacher/astronaut and asks me if she can be all three. I told her that I think she could do it if that's what she really wants. And I mean it.
The juxtaposition of her with her brother scares me. Like her, I have no idea what the future holds for Zach - but the promising part is missing. When Zach looks at me, it is with a certain intensity. I know he loves me. I know he counts on me to be there. As much as I love being needed this way - it scares me. What if I were to fall ill or leave this world early? It is sort of odd, but I value my own life so much more now because of him. Sophia made me want to be a better person, a role model for her. I make sure to take care of my health and try and live positively and with thought, because I want her too. With Zach, I feel that these ideas are for a different purpose, I need to stay healthy and think positively so that I can be there for him. He will need a level of support that she likely won't. That isn't love, that is doing what is necessary out of love.
I was thinking about my father and how I sure do miss him. And then I thought about my mother and the inevitable. When Mom was first diagnosed with lung cancer, I remember part of the grieving process kicked in for me. I realized that I did not want to be an orphan. Yes, even at age 40 I would feel orphaned. There is a sort of love that is unique to the parent/child relationship (if you are lucky). It makes you feel safe and protected - even though it doesn't make sense. What is my 78 year old, cane walking, oxygen taking mother really going to protect me from? A life without love I guess. I know my mother loves me like no other. She knows me, there is no explanation needed. It scares me to have to face this world without her around. A mother is a shadow; she feels your pain when you are troubled and your joy with your successes. I know how she feels, because it is how I feel about my kids. Every time Sophia sheds a tear, especially if it is out of frustration or hurt feelings, my heart aches. When I see Zach frustrated in getting his wants/needs met, my heart aches. When I hear a giggle out of either of them, I am soaring. My life's pleasure is measured out of their happiness.
Sometimes it is hard for me to have joy in my life; there just isn't enough laughter to compensate. When I see how frustrated Steven is with our situation, and not without reason, my heart sinks. I think back to when we were dating and he told me he didn't want to have children. I told him, OK, thank you very much for playing the "Dating Leanne Game", it was nice knowing you, good luck in life, I am afraid I have run out of parting gifts. That's right, I promptly told him that would be the end of our relationship. I have always known I wanted children and I wasn't stupid enough to try and change his opinion. (Being 31 had taught me a few things about relationships.) He showed up at my doorstep a day or two later, tears in his eyes, and told me he that it wasn't that he didn't want to have children, but that he was frightened to have children. The world is tough, people can really stink and he wouldn't want to have his children endure the nastiness in this world. I realized then and there, that as much of a skeptic as I am, in my heart I am an enduring optimist. This is, perhaps, what helps me to get through all of the madness.
But Steve is not. I feel as if every bad piece of news torments him far more than myself; confirms that the world is an evil place with evil people doing evil things to his precious children. I struggle with thinking that he made the wrong choice so many years ago when he decided to continue with the "Dating Leanne Game" and that perhaps I should have really ended it there for his sake. If I could go back 10 years...
I remember telling Steve that I wanted to share all the beautiful things in this world with a child- a weekend camping, the companionship of a pet, the smiles of a friend, a waterfall, learning to play the piano, fall leaves, winter snow, blue skies, chocolate ice cream. Indeed these are the things I loved doing and observing with my nieces and nephews. I wanted that for myself.
I recall being told I was old with my first pregnancy. OK - not really, but pretty much. Once you are around 35 you are considered old in the medical establishments eyes when it comes to popping out babies. They wanted me to have the baby tested for genetic faults due to my looming age. I recall talking to Steve, telling him that I didn't want the testing, because I felt even if the child did have Down syndrome or some other "abnormality", I could not abort. We discussed this, and I distinctly remember saying that we would love the baby, no matter what. These words were so naive I realize now. Not that I didn't mean them, just that I had no idea what strength it would take. Don't get me wrong, it is very easy to love Zach. But the intensity of the love is paired with such an extreme fear of what he might endure in this world. I feel as though as long as I am alive, I can deflect the crap. I am not sure if Steve is as confident about this.
So I largely don't talk about a lot of my biggest fears regarding Zach because I don't want to burden him with it. This makes me feel pretty alone. I am not sure if he reads the blog- I think he occasionally does. But even here, I sometimes avoid writing the things that make my heart stop when thinking about Zach - the things that I occasionally read about or hear about that happen to other ASD children.
Take a deep breath. OK. Right now, I just have to deal with today - and a little about next week. Let's get through this next CPSE meeting. Holding my breath until Wednesday... Thursday. Ahh geesh, I really need to get back to my old organized self and find the envelope with the meeting date in it. I am pathetic.
CPSE is the Committee for Preschool Special Education - it's basically the reps from the school district making sure that the county is getting it's money's worth for paying for his preschool program. These meetings occur a few times a year and are part of the things that makes having kids with special needs pretty much stink. Usually everything should get nailed down during these meetings - like what sort of services and how much. But occasionally, you will think you agreed to something, you leave after cordial farewells feeling good about the outcome, a week passes, the paperwork arrives with a report that says something different than you thought you agreed to. You just never know how these things are going to work out. Bring a tape recorder.
My favorite (note sarcasm please) part is the balancing act between "he's showing progress so let's keep him in this program with the intensity level as is" to the "he is showing so much progress he doesn't need this intensity anymore". In other words, you want your kid do to well, but not too well. *sigh*
Overall, Zach is still at least 12 months behind where he should be in just about every category of academic testing - social, cognitive, fine and gross motor, and speech (all areas of speech including expressive language, receptive language, articulation, etc. ) When I read the report, I basically was pretty low for around 10 days. I could be happy about one thing, they likely would keep his services where they are. This includes keeping him signed in for a summer school program. Each of the evaluators in the report were thorough (gracious?) enough to write that Zach had issues when transitioning back to school after being out for illness or vacations. I am glad I have a team that anticipates what the county and school district would likely throw at us. This track record of transition issues suggests that a break of 2 months could be catastrophic for him. I have heard stories that other children who did not have this indicated in their records were told to go without services for a week or two, and see if there is any regression noted. I am hopeful that this is documented well enough to suffice. (Knock on wood, say a prayer, cross your fingers, whatever...)
So after struggling with trying to love Zach for the child he is, accept the autism, take each day as it comes, look at the progress he has made, I read these words, and my heart has been broken all over again. I keep on thinking about the 14 more years of going through this cycle of having to read words that talk about such things as: deficits, being behind, issues, problems, behaviors, standard deviations, delays, appropriateness, and I wonder, will I ever be able to handle this? I know I am somehow getting by, by the grace of the Almighty, but I do not feel like I am handling this, and rumors have it that it will become harder as he gets older. Is it still in my head that all is still normal? Is that why reading this report is so difficult - it is slapping me with the reality of my life? a reality that I am still fighting?
In this report there are other words, sweet and happy come to mind. You can sugar coat it all you want, it doesn't take the sting of all those other words away. He is sweet. He is still Zach. I love him. Always will.
Which brings me to the next issue so hard to get over - Sophia asked me the other days if I loved Zach more than I love her. I could easily understand why she might think this. Zach gets lots of attention, therapists coming to see him, much of my conversations are about him, my life revolves around his therapy, schooling, diet, doctors appointments, research, etc. I love both my kids so much. Some times I want to tell her that she is the only thing keeping me sane - seeing her growth, slowly adding into her independence, a complete budding flower that I merely water and fertilize once in awhile. I am not sure what the future holds for Sophia, but it looks so promising! She says she wants to be a nurse/teacher/astronaut and asks me if she can be all three. I told her that I think she could do it if that's what she really wants. And I mean it.
The juxtaposition of her with her brother scares me. Like her, I have no idea what the future holds for Zach - but the promising part is missing. When Zach looks at me, it is with a certain intensity. I know he loves me. I know he counts on me to be there. As much as I love being needed this way - it scares me. What if I were to fall ill or leave this world early? It is sort of odd, but I value my own life so much more now because of him. Sophia made me want to be a better person, a role model for her. I make sure to take care of my health and try and live positively and with thought, because I want her too. With Zach, I feel that these ideas are for a different purpose, I need to stay healthy and think positively so that I can be there for him. He will need a level of support that she likely won't. That isn't love, that is doing what is necessary out of love.
I was thinking about my father and how I sure do miss him. And then I thought about my mother and the inevitable. When Mom was first diagnosed with lung cancer, I remember part of the grieving process kicked in for me. I realized that I did not want to be an orphan. Yes, even at age 40 I would feel orphaned. There is a sort of love that is unique to the parent/child relationship (if you are lucky). It makes you feel safe and protected - even though it doesn't make sense. What is my 78 year old, cane walking, oxygen taking mother really going to protect me from? A life without love I guess. I know my mother loves me like no other. She knows me, there is no explanation needed. It scares me to have to face this world without her around. A mother is a shadow; she feels your pain when you are troubled and your joy with your successes. I know how she feels, because it is how I feel about my kids. Every time Sophia sheds a tear, especially if it is out of frustration or hurt feelings, my heart aches. When I see Zach frustrated in getting his wants/needs met, my heart aches. When I hear a giggle out of either of them, I am soaring. My life's pleasure is measured out of their happiness.
Sometimes it is hard for me to have joy in my life; there just isn't enough laughter to compensate. When I see how frustrated Steven is with our situation, and not without reason, my heart sinks. I think back to when we were dating and he told me he didn't want to have children. I told him, OK, thank you very much for playing the "Dating Leanne Game", it was nice knowing you, good luck in life, I am afraid I have run out of parting gifts. That's right, I promptly told him that would be the end of our relationship. I have always known I wanted children and I wasn't stupid enough to try and change his opinion. (Being 31 had taught me a few things about relationships.) He showed up at my doorstep a day or two later, tears in his eyes, and told me he that it wasn't that he didn't want to have children, but that he was frightened to have children. The world is tough, people can really stink and he wouldn't want to have his children endure the nastiness in this world. I realized then and there, that as much of a skeptic as I am, in my heart I am an enduring optimist. This is, perhaps, what helps me to get through all of the madness.
But Steve is not. I feel as if every bad piece of news torments him far more than myself; confirms that the world is an evil place with evil people doing evil things to his precious children. I struggle with thinking that he made the wrong choice so many years ago when he decided to continue with the "Dating Leanne Game" and that perhaps I should have really ended it there for his sake. If I could go back 10 years...
I remember telling Steve that I wanted to share all the beautiful things in this world with a child- a weekend camping, the companionship of a pet, the smiles of a friend, a waterfall, learning to play the piano, fall leaves, winter snow, blue skies, chocolate ice cream. Indeed these are the things I loved doing and observing with my nieces and nephews. I wanted that for myself.
I recall being told I was old with my first pregnancy. OK - not really, but pretty much. Once you are around 35 you are considered old in the medical establishments eyes when it comes to popping out babies. They wanted me to have the baby tested for genetic faults due to my looming age. I recall talking to Steve, telling him that I didn't want the testing, because I felt even if the child did have Down syndrome or some other "abnormality", I could not abort. We discussed this, and I distinctly remember saying that we would love the baby, no matter what. These words were so naive I realize now. Not that I didn't mean them, just that I had no idea what strength it would take. Don't get me wrong, it is very easy to love Zach. But the intensity of the love is paired with such an extreme fear of what he might endure in this world. I feel as though as long as I am alive, I can deflect the crap. I am not sure if Steve is as confident about this.
So I largely don't talk about a lot of my biggest fears regarding Zach because I don't want to burden him with it. This makes me feel pretty alone. I am not sure if he reads the blog- I think he occasionally does. But even here, I sometimes avoid writing the things that make my heart stop when thinking about Zach - the things that I occasionally read about or hear about that happen to other ASD children.
Take a deep breath. OK. Right now, I just have to deal with today - and a little about next week. Let's get through this next CPSE meeting. Holding my breath until Wednesday... Thursday. Ahh geesh, I really need to get back to my old organized self and find the envelope with the meeting date in it. I am pathetic.
Tuesday, March 16, 2010
Dead Fish
This is an announcement that Fluffy the red Siamese Fighting Fish (Betta) has died. (Most likely resultant from a previous fish escapade/mishap.) He fought the brave fight though. Sophia was saddened at the obligatory leaving ceremony ala flush bowl because she said "I love him!" Can people really love fish?
OK - I am just hoping that the "all drains lead to the ocean" phrase from Nemo doesn't come popping into her head, because she knows that bettas are fresh water fish and I am sure mass confusion will ensue...
A sad day for Sophia.
OK - I am just hoping that the "all drains lead to the ocean" phrase from Nemo doesn't come popping into her head, because she knows that bettas are fresh water fish and I am sure mass confusion will ensue...
A sad day for Sophia.
Sunshine
When you live in Syracuse, gray comes to mind. Indeed, many have claimed to have seen a large, bright UFO, and realized that oops - it's just March. Yes, the sun has indeed been out more than it has been hidden these past 16 days. Nature's prozac has finally arrived.
We increased a supplement Zach is taking called DMG a few weeks ago. For over a week, the teachers and therapists at Zach's school have been commenting on how energetic and attentive he has been. Unfortunately, we have had a few night wakings and early morning rises with this sudden burst of energy. The funny part is they were just about to start a program with the occupational therapist to increase his "arousal" (which, BTW, just sounds wrong to me) and totally screws up the baseline.
I am also wondering if the change in weather is contributing to my dear son's increase in energy. I often think of the study done a few years ago at Cornell that discussed areas with higher rates of precipitation and autism incidence (see Rain Man) Before anyone goes to thinking that I suggest that rain causes autism - like must studies, it was not showing causality, just associations. Environmental changes sure affect me, perhaps my sensory child even more.
I have begun running again. I hate the dreadmill ... I mean treadmill. I just can't seem to get going on the thing. I do so much better outside, and that is why I like that big yellow globe in the sky. I have decided to be a fair weather runner right now, since I feel like I am low energy and some other minor issues that lead me to believe the ol' immune system isn't running up to par.
Zach's CPSE meeting is next week, I think the 25th. Hurray. (said in a monotone voice) These things are as exciting as a gynecological exam. In preparation for the meeting, I will be meeting with his team this week to discuss the report they sent home last week that they also provided to the school district. As I read the report, the wind was taken out of my sails. I have been having such a hard time with the progress Zach has made. It just doesn't seem anywhere near what I expected - and I don't think I was expecting that much. I certainly wasn't expecting a neurotypical child! I guess his motor skills seem to be falling further and further behind where they should be - and these were not an issue for him before. I never see him write, and have been trying to encourage him. He used to scribble here and there. The folks at school say he is doing it somewhat there, with prompting, and a lot of it I have a feeling. Although he knows more words than he did 6 months ago, he doesn't use them spontaneously. He appears to need prompting for most all speech. He occasionally will request food such as "milk", "juice", "apple", "banana". He will request actions like: "up", "come", "tickle", "hug". He can receptively identify: cow, sheep, dog, cat, bird, ball, chair, shirt, shoe, spoon, airplane, car and a few others , however, he only says these words when prompted. He can follow a few simple commands such as "clap your hands", "stomp your feet", "stand up", "sit down" and we are working really hard on "come here".
Zach doesn't appear to understand nor desire the concept of "joint attention" which is basically when a child will find something familiar and point it out to those who are around him. ("Momma, apple!" as he gestures to an apple in a store. Without this desire to seek others into his interests, I have a feeling we will not see language progress into the spontaneous language I would like him to have. The question is, will he ever want others to share with him in his thoughts and feelings?
I can clearly say, after knowing Steven an official 10 years as of tomorrow, this might not be. And this is the case of low expectations that has me concerned. I can see why some people avoid the label of autism. There is the obvious social stigma (yes, there are people out there that would refer to my son as a "retard") . But there is also the excuse of autism for all things that are not what you want them to be. Teachers are likely not to push as hard if they can get away with a "he's autistic" excuse. Not that they do it intentionally, mind you. I think Zach's easy going personality is likely getting in the way of showing academic progress. Where it is nice since he sort of goes with the flow, many children on the spectrum have great difficulty in this arena, it lends him to described as a sort of lethargic sort of kid without much initiative. When they say that kids with autism have limited social interests as part of this disorder, I think of his old man, and think, what if it is just personality?
Recently a friend's son went for an eye exam and required glasses. This child who had tantrums, also referred to as autistic meltdowns, has been doing much better in school, showing improvement in tantrums and hand writing. As she puts it "only time will tell" if she can attribute this to his newly found eyesight. I hear these stories so frequently with children on the spectrum. It is important to consider the child as you would any other when it comes to issues, and then, as a last resort, just put it out there as an ASD trait if you cannot figure anything else out. That is why after 3 back to back ear infections, we will be having Zach receive tubes in his ears and he will finally go for an ABR hearing test at the end of April. We want to rule out that Zach's speech (in particular his amount of speech, plus his articulation and phonology) are due to any hearing difficulties. Let's not blame the autism yet when it might not be.
Low expectations lend themselves to low results. High expectations being unmet are exhausting. How do you balance this?
-Feeling autism burnout in sunny old Syracuse.
We increased a supplement Zach is taking called DMG a few weeks ago. For over a week, the teachers and therapists at Zach's school have been commenting on how energetic and attentive he has been. Unfortunately, we have had a few night wakings and early morning rises with this sudden burst of energy. The funny part is they were just about to start a program with the occupational therapist to increase his "arousal" (which, BTW, just sounds wrong to me) and totally screws up the baseline.
I am also wondering if the change in weather is contributing to my dear son's increase in energy. I often think of the study done a few years ago at Cornell that discussed areas with higher rates of precipitation and autism incidence (see Rain Man) Before anyone goes to thinking that I suggest that rain causes autism - like must studies, it was not showing causality, just associations. Environmental changes sure affect me, perhaps my sensory child even more.
I have begun running again. I hate the dreadmill ... I mean treadmill. I just can't seem to get going on the thing. I do so much better outside, and that is why I like that big yellow globe in the sky. I have decided to be a fair weather runner right now, since I feel like I am low energy and some other minor issues that lead me to believe the ol' immune system isn't running up to par.
Zach's CPSE meeting is next week, I think the 25th. Hurray. (said in a monotone voice) These things are as exciting as a gynecological exam. In preparation for the meeting, I will be meeting with his team this week to discuss the report they sent home last week that they also provided to the school district. As I read the report, the wind was taken out of my sails. I have been having such a hard time with the progress Zach has made. It just doesn't seem anywhere near what I expected - and I don't think I was expecting that much. I certainly wasn't expecting a neurotypical child! I guess his motor skills seem to be falling further and further behind where they should be - and these were not an issue for him before. I never see him write, and have been trying to encourage him. He used to scribble here and there. The folks at school say he is doing it somewhat there, with prompting, and a lot of it I have a feeling. Although he knows more words than he did 6 months ago, he doesn't use them spontaneously. He appears to need prompting for most all speech. He occasionally will request food such as "milk", "juice", "apple", "banana". He will request actions like: "up", "come", "tickle", "hug". He can receptively identify: cow, sheep, dog, cat, bird, ball, chair, shirt, shoe, spoon, airplane, car and a few others , however, he only says these words when prompted. He can follow a few simple commands such as "clap your hands", "stomp your feet", "stand up", "sit down" and we are working really hard on "come here".
Zach doesn't appear to understand nor desire the concept of "joint attention" which is basically when a child will find something familiar and point it out to those who are around him. ("Momma, apple!" as he gestures to an apple in a store. Without this desire to seek others into his interests, I have a feeling we will not see language progress into the spontaneous language I would like him to have. The question is, will he ever want others to share with him in his thoughts and feelings?
I can clearly say, after knowing Steven an official 10 years as of tomorrow, this might not be. And this is the case of low expectations that has me concerned. I can see why some people avoid the label of autism. There is the obvious social stigma (yes, there are people out there that would refer to my son as a "retard") . But there is also the excuse of autism for all things that are not what you want them to be. Teachers are likely not to push as hard if they can get away with a "he's autistic" excuse. Not that they do it intentionally, mind you. I think Zach's easy going personality is likely getting in the way of showing academic progress. Where it is nice since he sort of goes with the flow, many children on the spectrum have great difficulty in this arena, it lends him to described as a sort of lethargic sort of kid without much initiative. When they say that kids with autism have limited social interests as part of this disorder, I think of his old man, and think, what if it is just personality?
Recently a friend's son went for an eye exam and required glasses. This child who had tantrums, also referred to as autistic meltdowns, has been doing much better in school, showing improvement in tantrums and hand writing. As she puts it "only time will tell" if she can attribute this to his newly found eyesight. I hear these stories so frequently with children on the spectrum. It is important to consider the child as you would any other when it comes to issues, and then, as a last resort, just put it out there as an ASD trait if you cannot figure anything else out. That is why after 3 back to back ear infections, we will be having Zach receive tubes in his ears and he will finally go for an ABR hearing test at the end of April. We want to rule out that Zach's speech (in particular his amount of speech, plus his articulation and phonology) are due to any hearing difficulties. Let's not blame the autism yet when it might not be.
Low expectations lend themselves to low results. High expectations being unmet are exhausting. How do you balance this?
-Feeling autism burnout in sunny old Syracuse.
Wednesday, March 3, 2010
Kids OK, Mom not so much
So on to the next project I go. Sort of. It's time I start concentrating efforts on the Early Identification Workshop again. It sort of took the back burner for awhile since it seemed I was running into more roadblocks than actually making progress and have no clue what it takes to get something like this going.
I spent most of the morning looking for the documentation that Upstate provided to me that needs to be completed to get the course certified as a Continuing Medical Education (CME) accredited course. This was so frustrating to me that I am so disorganized. Something so simple should not eat up over 2 hours of your time.
I feel incredibly overwhelmed, I try to attend to the backlog of emails, the heaving pile of unopened mail, the memos and notes from schools, two phones who seem to ring enough to make me not want to answer them, and then there is the school/therapy/activity schedule coupled with the doctors appointments. Plus let's not forget the quality time I am supposed to spend with the kids. The paperwork stares at me, I swear it does.
An email came at me asking to man a booth at a local resource fair for kids with disabilities that I had done last year. I figured out a way that I can bring the kids to it, meet Steve there after work, and there goes Friday night.
Then there was the phone call from the pediatrician asking to see copies of the lab work that our integrative pediatrician had done. I was told that prior to taking any next steps with Zachary, he needs these test reports. Where are those?
The memo from Zach's school indicated that there has once again been a staff change in his classroom. What is going on there?
A notice came that there will be a summer camp fair coming up that I should look into to keep Sophia occupied while we are running around with Zach. Can we afford this?
I read the first paragraph in a letter from the school district saying we need to start talking CPSE meetings to discuss ... and then I quit reading and added it to the to-do pile.
Medicaid Waiver has been approved with contingencies... 40 pages of government speak that I need to wade through to understand what this means when all I really want to know is "What are the next steps?"
Swimming lessons start this weekend for Sophia. I have a swimsuit for her, but nothing else. I am not even sure what we need, I have no paperwork on this since her friend actually signed me up for this which is extremely generous, but has left me with no clue and having t scramble to find the information on the program.
A therapist contacted me about getting Zach swim therapy. I think this would be great for Zach. However, it looks like I will have to request his OT or PT to make the recommendation and there will be paperwork and approvals, yada yada yada. Add that one on too.
Then the PT at school recommended Zach get orthotics. I called his pediatrician with this one and they were able to lickity split come up with an appointment. Then a message came from the PT saying that the appointment should be with an orthotist not an orthopedist but that I need a prescription from a doctor, blah blah blah...
And then the phone call came from the a doctor's office reminding me that Zach, Sophia and I all have appointments this afternoon.
Tomorrow is Zach's appointment with the ENT office. I have to make arrangements to get Sophia on the bus.
I log on to facebook to forget about all the stuff piling up and notice a friend's son who passed from H1N1 complications changed his profile picture to his son's. My heart sinks. Facebook is not helping.
I clean the toilets, the sinks, do the laundry, pick up the house a little, make Sophia her lunch. She gets off the bus, I force her to wash her hands, get her fed, redressed, and into the car we got to go cross town and get brother. We get brother, get the lo down on how he did, grab program books, bundle up once again, and back into the car we go to get back home to start afternoon therapy. Then there is that doctor appointment, back home to make dinner and evening therapy, start homework, my head spins. Then the phone rings, the school psychologist calls, a schoolmate of Sophie's (and classmate's sister) died at the school today from complications from a medical condition.
I feel the warm tears slowly trickle from the sides of my eyes. I rarely cry. And no, I don't have my period. For the next 3 hours, as I do homework, give baths, brush teeth, read stories, get paperwork done for the next days doctor appointment, and everything else, the tears occasionally trickle. I cannot stop them. I am overloaded, I am burned out, I am without a light at the end of the tunnel. I think of the cliches that might help me, but they don't. "Life is a journey" in particular gets to me. I think this journey has been hard and shaky for too long. But I cannot stop.
I look in the mirror, and I am disgusted. The redness around my eyes from crying sure isn't helping. Maybe that's why I don't cry that often, my vanity prevents me. I suck at all this. I don't want to feel like everything hinges on my decisions and efforts regarding Zach's future. Hey - they are even blaming my make up and hairspray. I just can't get it right. But guess what - that's what it all comes down to. They always find a way to blame it on the mother. Damn Freud.
I spent most of the morning looking for the documentation that Upstate provided to me that needs to be completed to get the course certified as a Continuing Medical Education (CME) accredited course. This was so frustrating to me that I am so disorganized. Something so simple should not eat up over 2 hours of your time.
I feel incredibly overwhelmed, I try to attend to the backlog of emails, the heaving pile of unopened mail, the memos and notes from schools, two phones who seem to ring enough to make me not want to answer them, and then there is the school/therapy/activity schedule coupled with the doctors appointments. Plus let's not forget the quality time I am supposed to spend with the kids. The paperwork stares at me, I swear it does.
An email came at me asking to man a booth at a local resource fair for kids with disabilities that I had done last year. I figured out a way that I can bring the kids to it, meet Steve there after work, and there goes Friday night.
Then there was the phone call from the pediatrician asking to see copies of the lab work that our integrative pediatrician had done. I was told that prior to taking any next steps with Zachary, he needs these test reports. Where are those?
The memo from Zach's school indicated that there has once again been a staff change in his classroom. What is going on there?
A notice came that there will be a summer camp fair coming up that I should look into to keep Sophia occupied while we are running around with Zach. Can we afford this?
I read the first paragraph in a letter from the school district saying we need to start talking CPSE meetings to discuss ... and then I quit reading and added it to the to-do pile.
Medicaid Waiver has been approved with contingencies... 40 pages of government speak that I need to wade through to understand what this means when all I really want to know is "What are the next steps?"
Swimming lessons start this weekend for Sophia. I have a swimsuit for her, but nothing else. I am not even sure what we need, I have no paperwork on this since her friend actually signed me up for this which is extremely generous, but has left me with no clue and having t scramble to find the information on the program.
A therapist contacted me about getting Zach swim therapy. I think this would be great for Zach. However, it looks like I will have to request his OT or PT to make the recommendation and there will be paperwork and approvals, yada yada yada. Add that one on too.
Then the PT at school recommended Zach get orthotics. I called his pediatrician with this one and they were able to lickity split come up with an appointment. Then a message came from the PT saying that the appointment should be with an orthotist not an orthopedist but that I need a prescription from a doctor, blah blah blah...
And then the phone call came from the a doctor's office reminding me that Zach, Sophia and I all have appointments this afternoon.
Tomorrow is Zach's appointment with the ENT office. I have to make arrangements to get Sophia on the bus.
I log on to facebook to forget about all the stuff piling up and notice a friend's son who passed from H1N1 complications changed his profile picture to his son's. My heart sinks. Facebook is not helping.
I clean the toilets, the sinks, do the laundry, pick up the house a little, make Sophia her lunch. She gets off the bus, I force her to wash her hands, get her fed, redressed, and into the car we got to go cross town and get brother. We get brother, get the lo down on how he did, grab program books, bundle up once again, and back into the car we go to get back home to start afternoon therapy. Then there is that doctor appointment, back home to make dinner and evening therapy, start homework, my head spins. Then the phone rings, the school psychologist calls, a schoolmate of Sophie's (and classmate's sister) died at the school today from complications from a medical condition.
I feel the warm tears slowly trickle from the sides of my eyes. I rarely cry. And no, I don't have my period. For the next 3 hours, as I do homework, give baths, brush teeth, read stories, get paperwork done for the next days doctor appointment, and everything else, the tears occasionally trickle. I cannot stop them. I am overloaded, I am burned out, I am without a light at the end of the tunnel. I think of the cliches that might help me, but they don't. "Life is a journey" in particular gets to me. I think this journey has been hard and shaky for too long. But I cannot stop.
I look in the mirror, and I am disgusted. The redness around my eyes from crying sure isn't helping. Maybe that's why I don't cry that often, my vanity prevents me. I suck at all this. I don't want to feel like everything hinges on my decisions and efforts regarding Zach's future. Hey - they are even blaming my make up and hairspray. I just can't get it right. But guess what - that's what it all comes down to. They always find a way to blame it on the mother. Damn Freud.
Tuesday, March 2, 2010
And she's not
It is 37 degrees today in Syracuse, which makes it feel like spring. People are walking around without their gloves or hats on, jackets unzipped letting the warm (ha ha ha) air and sunshine in. One more parenting class to go. Last night's was very interesting with two parents and a school psychologist giving presentations. I managed to keep my mouth shut, so, "Hurray!" for me.
Zach had a busy day yestreday- having gone from school, to therapy, to playing with sista', and then a cat nap on the 15 minute drive to this parenting class. I expected when we dropped him off a bit of a tantrum would ensue, since he fell asleep in one place and was going to plopped in a new one with strange people and then awakened. Not very nice of us. Well, we woke him up, he took one look in the gym and smiled and ran in. That was that. He had been eating some GFCF crackers and potato chips on the drive down as a snack. This must be pointed out since during our class he managed to puke. Now, the good ladies who volunteer to watch the kids while us adults go and get educated have no idea what Zach's puking is like. But it seems like a really benign incident. These women were so gracious about the event that I have to thank God they exist. I certainly was never so gracious in my pre-disability-knowing days. I am always surprised how well he does with transitions. I am always surprised what a selfish fool I was before all of this.
We came home at 8:30, into jammies, teeth brushed, and our little wee ones passed out on us by 9:15. It was almost a miracle to have both kids asleep that early.
Then there was today. Zach went off to school, and Sophia and I met up with Daddy at the developmental pediatrician's office. Sophia had her long awaited Autism Diagnostic Observation Schedule (ADOS) test run today. There are separate sections to the test, and she scored a 4 composite. A 7 is required for autism spectrum diagnosis (7 is mild and 10 is severe). While she did not score as being on the spectrum, her score does show warrant why there were concerns. Her issues - reciprocal relationship stuff and the whole lining things up sorta thing combined with fine motor issues and sensory difficulties. They said they did not note sensory issues, and she did not display them during the test, although moments after, she was tiptoeing around the office when the doctor had her take her shoes off to check her feet. I told him of my concern that some children require orthotics and even surgery to correct for ligament and muscle issues pertaining to toe walking. He told me that if we were seeing strain, we could avoid both with a shot of botox in the calf. Never heard this one before!
There was a comment from the practitioner who ran the test that Sophia's imagination was limited, because she appeared to have to mimic someone else's fiction rather than derive her own. That's what the test showed. Well, I have frequently observed Sophia to be just about the opposite of this! Steve pointed out that during the test, when asked to draw a picture, Sophia drew two of her little stuffed animals' pictures outside in the sunshine. He went on to say that if there is one thing showing someone has imagination, it's a child from Syracuse drawing pictures of the sun. LOL
The doctor appeared happy that she is receiving OT and understands that the demands of kindergarten have been pretty few and weak. She knew most of the material going in, and it is only half day. Let's see how first grade goes. He suggested a one year follow up appointment to check progression. The doctor asked us if we were surprised by the outcome of the test. Do I think Sophie is autistic? Not really. But that whole spectrum thing - I think us typical folks have a spectrum of these tendencies too. And I have to wonder with those things that Sophia and Zach have in common (toe walking) and not in common (Zach is not as fussy about things like food and schedule that Sophia is) it makes me question what autism is. It makes me wonder how one goes about becoming functional - and what functional means.
Everyone that works with Zach likes him. We have had people say they would like to work with him. He is not a high functioning autistic kid - he is more in the middle, so it isn't his stellar abilities. He isn't the most social, he doesn't seek people out but he does tolerate people and want them to hug, kiss and tickle him. He is darned cute. And he has this charm. That's what the good doctor from Yale said, I can still remember saying "He is charming!". If he can get people to accommodate him in life with his charm - isn't that functional? Politicians/actors/models/salesmen have been doing it for years. So now I ask myself what is his charm? I have decided that it unequivocally is the dimples.
So onward we go - 1 dxed is fine by me. Sophia is not autistic. She is Sophia! I relate this in another way to our other beautiful child; Zachary is not autism, he is Zachary. We have to learn to enjoy the ride of figuring out what exactly who Zach is. I think the best way to do this is to give him plenty of opportunity to show us. Isn't this the same with all kids?
Zach had a busy day yestreday- having gone from school, to therapy, to playing with sista', and then a cat nap on the 15 minute drive to this parenting class. I expected when we dropped him off a bit of a tantrum would ensue, since he fell asleep in one place and was going to plopped in a new one with strange people and then awakened. Not very nice of us. Well, we woke him up, he took one look in the gym and smiled and ran in. That was that. He had been eating some GFCF crackers and potato chips on the drive down as a snack. This must be pointed out since during our class he managed to puke. Now, the good ladies who volunteer to watch the kids while us adults go and get educated have no idea what Zach's puking is like. But it seems like a really benign incident. These women were so gracious about the event that I have to thank God they exist. I certainly was never so gracious in my pre-disability-knowing days. I am always surprised how well he does with transitions. I am always surprised what a selfish fool I was before all of this.
We came home at 8:30, into jammies, teeth brushed, and our little wee ones passed out on us by 9:15. It was almost a miracle to have both kids asleep that early.
Then there was today. Zach went off to school, and Sophia and I met up with Daddy at the developmental pediatrician's office. Sophia had her long awaited Autism Diagnostic Observation Schedule (ADOS) test run today. There are separate sections to the test, and she scored a 4 composite. A 7 is required for autism spectrum diagnosis (7 is mild and 10 is severe). While she did not score as being on the spectrum, her score does show warrant why there were concerns. Her issues - reciprocal relationship stuff and the whole lining things up sorta thing combined with fine motor issues and sensory difficulties. They said they did not note sensory issues, and she did not display them during the test, although moments after, she was tiptoeing around the office when the doctor had her take her shoes off to check her feet. I told him of my concern that some children require orthotics and even surgery to correct for ligament and muscle issues pertaining to toe walking. He told me that if we were seeing strain, we could avoid both with a shot of botox in the calf. Never heard this one before!
There was a comment from the practitioner who ran the test that Sophia's imagination was limited, because she appeared to have to mimic someone else's fiction rather than derive her own. That's what the test showed. Well, I have frequently observed Sophia to be just about the opposite of this! Steve pointed out that during the test, when asked to draw a picture, Sophia drew two of her little stuffed animals' pictures outside in the sunshine. He went on to say that if there is one thing showing someone has imagination, it's a child from Syracuse drawing pictures of the sun. LOL
The doctor appeared happy that she is receiving OT and understands that the demands of kindergarten have been pretty few and weak. She knew most of the material going in, and it is only half day. Let's see how first grade goes. He suggested a one year follow up appointment to check progression. The doctor asked us if we were surprised by the outcome of the test. Do I think Sophie is autistic? Not really. But that whole spectrum thing - I think us typical folks have a spectrum of these tendencies too. And I have to wonder with those things that Sophia and Zach have in common (toe walking) and not in common (Zach is not as fussy about things like food and schedule that Sophia is) it makes me question what autism is. It makes me wonder how one goes about becoming functional - and what functional means.
Everyone that works with Zach likes him. We have had people say they would like to work with him. He is not a high functioning autistic kid - he is more in the middle, so it isn't his stellar abilities. He isn't the most social, he doesn't seek people out but he does tolerate people and want them to hug, kiss and tickle him. He is darned cute. And he has this charm. That's what the good doctor from Yale said, I can still remember saying "He is charming!". If he can get people to accommodate him in life with his charm - isn't that functional? Politicians/actors/models/salesmen have been doing it for years. So now I ask myself what is his charm? I have decided that it unequivocally is the dimples.
So onward we go - 1 dxed is fine by me. Sophia is not autistic. She is Sophia! I relate this in another way to our other beautiful child; Zachary is not autism, he is Zachary. We have to learn to enjoy the ride of figuring out what exactly who Zach is. I think the best way to do this is to give him plenty of opportunity to show us. Isn't this the same with all kids?
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