I, like many other women with children in this world, spend a majority of my time attempting to make order out of chaos. I organize spices, fold towels, stack laundry, sort and colorize closets, review homework assignments, verify and pay bills, (talk about chaos, try understanding your phone bill sometimes....). It all can leave your head spinning.
In the typical world, you regroup from time to time, look around the house, dust bunnies still in the corners, and you notice that as unordered and imperfect as life may be, things are going in the right direction, the children are healthy and are making strides toward those goals you know they will achieve one day; high school graduation, a job, maybe marriage and children of their own; the whole cycle set to repeat.
Add a disability and this chaos goes beyond this model for there is one thought that I revisit over and over again: "what is going to happen when I am gone". It is the clincher in all this.
I will be taking a workshop on special needs trusts. Sounds like a good time, right? I am hoping it will give me some peace of mind in what I need to do to make sure that Zach will be taken care of after we are gone.
Steve and I have not updated our wills. We need to. I guess I have not wanted to consider the more than difficult decisions that we need to make regarding Zach's care when we leave. Who will take him? Who will want to? Who will be able to handle this and not resent us? Not quite the straight line approximation that most others have to deal with.
Now I am completely in love with my son, and cannot imagine anyone not thinking he is anything but the fantastic kid he is. However, when I am cleaning up poop from the side of the toilet because Zach has gotten confused once again about: standing is for peeing, and we need to sit to poop, well, these are the moments that make my hands go clammy, and not from the fact that I am cleaning up fecal matter. I view, as I do for all those in my life that I love, a privilege to be able to take care of things for those who need help. Blood, bedpans, feeding tubes, sponge baths, from babies to those near death, I have done it all.
But I know that most people do not share my "no big deal" attitude and understanding at taking care of business. It's not pleasant for me either. But it is what needs to be done and I can get through it without much stress. I often wonder if I should have been a nurse? It's funny because I realized that this is one of the gifts in life I have been given. Some people get abilities that land them Nobel or Pullitzer prizes. Me? Yeah, I get personal sanitation service insensitivity. Hurray. :)
Most moms are pretty good with this stuff. There was a time when dads weren't expected to change diapers. I guess most moms don't have to worry about this past the age of 4 though. I have come across parents who have to deal with this when the child is 14. Not the same as an 18 month old, I assure you. These people are amazing. I won't lie - I am really hoping I am not going to be in that group.
I love my kids. I worry about them. I try to take care of them. And I feel like a complete failure just about everyday with Zach. I am so grateful that he smiles and hugs me so often. He is such a forgiving soul. In the words of a friend: " He is so stinkin' cute." and he is. I never want that smile to go away.
So in trying to upturn every stone and make sure I am doing all that can be done, I am planning on making a secure future for him with a special needs trust. The problem is that it's a double edged sword; I feel like I am giving up on him by doing this preparation. Am I not keeping my expectations high enough that he will one day be able to take care of himself? Because of my bad attitude, am I going to create a situation where he will not flourish and become everything he could be?
There's another double edged sword: do I work him so that he can become all he can be? Have tons of services and therapy? Will this cause him not to learn on his own? Or worse: Will he think I don't love him as he is? Will that to cause him to lose that smile?
There is no certain path. There is so much potential for damage. There is no road less taken. There is only the circuitous path you forge yourself through a densely grown field of tall grass where you cannot see your feet, there are pot holes, and hills, stones, and snakes. And I cannot afford the good hiking boots. But I will carry him on my back, nonetheless, so he doesn't have to deal as much directly with the unknown that lay beneath.
It is just so much more complicated with special needs. I don't fear death. I don't even fear pain. I fear what will happen to my boy. If I could, I would protect him from all harm and sadness for his entire life. I would teach him all he needs to know. I would feed him, clothe him, shelter him, for his lifetime. I would make sure that smile never fades. I have a feeling that his innocence will never leave him, even if he were to become totally self sufficient. That is why his smile is so special, it is because he is unaware of the pain in the world, and the fact that there will are those in the world who wish to afflict him with it.
Yeah - this is not the motherhood I signed up for. But it is where we are. There is no amount of organization or preparation for this life. It's just one step at a time, some of them smaller than others, and hopefully, more of them forward than backwards.
Thursday, February 25, 2010
Wednesday, February 24, 2010
Something is fishy
If you were to meet Zach, you would think of him as a sweet child with a terrific smile. You would probably observe, at some point, that he was autistic, and seemed to not pay attention to much around him at times, and certainly not what others are doing. But if you were to know Zach like Steve and I and a few therapists do, then you would know, the kid is sly. He is totally aware. He will never really let you know what he knows unless it is on his terms. In other words, he is a cute little pain in the azz that we blame a lot of hi-jinx on autism that might be better attributed to his personality.
Before break, I had gone in to get Zach's program book from an room near where the lead psychologist's office is at school. While there, she had the chance to observe him play with several toys and commented that he was so interested in so many of them. He appeared to be more attentive to those toys his sister was playing with. She seem surprised by this. I, however, was not. This is very typical for Zach. This is not, however, necessarily typical for a child with autism. Zach loves Thomas (as many ASD kids do) but he also likes Hot Wheels, My Little Pony, Little People, and Weebles too.
According to teachers and aids at Zach's school, a few spontaneous outbursts and actions have been occurring from Zach. One day, he was knocking down a fellow classmates block towers, but they didn't realize it was Zach doing it. Apparently, he would wait for the aid to look away, and quickly do it. This is so-o-o Zach. He is a chip of the ol' block, and this is certainly something is old man would do. Zach finally just did it very openly, and they realized it was him. They never held Dimple Boy suspect. I have been trying to warn them!
Apparently, in circle time, they were doing something involving a monkey, and out of the blue came monkey noises to which they attributed to another student. Unable to contain himself, he continued to make them, and they realized it was Zach all along. But he never has been "taught" this. *sigh*
Yesterday, I attempted to have Zach draw a circle after I did. No luck. I was mumbling under my breath that he was never going to get it. The evening's therapist showed up. As I reviewed what her goals for the evening were, I showed her what I was attempting to do with him, and how it wasn't working. Except it did. As I drew a circle, and asked him to do it, he shakily drew one. Then I drew a horizontal line as I said "do this" and he did that too. But one last chance to show that it was just luck was blown too as I drew a vertical line with a "do this" and he likewise shakily drew one.
These few examples display a little of our frustration with him. I really don't think it is wishful thinking that he has more in him then he lets on. These little outbursts here and there, especially once he feels comfortable with people happen infrequent enough to say he can do anything, but frequently enough to say that he could be doing more.
I know he is feeling more comfortable with the folks at school. In fact, I would say that he downright has affection for them. Why? One action: pooping. Zach finally pooped at school for the first time about a month ago. That's when I knew the kid was feeling comfortable in his environment.
When Buddy died the Christmas of 2008, we were lost without a pet, and Sophia really wanted one. The following Easter, the Easter Bunny brought "Spot" and "Fluffy" to help fill the void. Zach has given these fish the occasional passing glance. And then there was last night, while I
was drawing the bath and Steve was at work. I came downstairs to see Zach sitting on the table in our foyer, totally enthralled and delighted. Sophia was yelling something like "Zach is petting the fish"to which she later explained she was saying "Zach is picking up the fish!". Here is my post from facebook to let you know what he was up to:
Before break, I had gone in to get Zach's program book from an room near where the lead psychologist's office is at school. While there, she had the chance to observe him play with several toys and commented that he was so interested in so many of them. He appeared to be more attentive to those toys his sister was playing with. She seem surprised by this. I, however, was not. This is very typical for Zach. This is not, however, necessarily typical for a child with autism. Zach loves Thomas (as many ASD kids do) but he also likes Hot Wheels, My Little Pony, Little People, and Weebles too.
According to teachers and aids at Zach's school, a few spontaneous outbursts and actions have been occurring from Zach. One day, he was knocking down a fellow classmates block towers, but they didn't realize it was Zach doing it. Apparently, he would wait for the aid to look away, and quickly do it. This is so-o-o Zach. He is a chip of the ol' block, and this is certainly something is old man would do. Zach finally just did it very openly, and they realized it was him. They never held Dimple Boy suspect. I have been trying to warn them!
Apparently, in circle time, they were doing something involving a monkey, and out of the blue came monkey noises to which they attributed to another student. Unable to contain himself, he continued to make them, and they realized it was Zach all along. But he never has been "taught" this. *sigh*
Yesterday, I attempted to have Zach draw a circle after I did. No luck. I was mumbling under my breath that he was never going to get it. The evening's therapist showed up. As I reviewed what her goals for the evening were, I showed her what I was attempting to do with him, and how it wasn't working. Except it did. As I drew a circle, and asked him to do it, he shakily drew one. Then I drew a horizontal line as I said "do this" and he did that too. But one last chance to show that it was just luck was blown too as I drew a vertical line with a "do this" and he likewise shakily drew one.
These few examples display a little of our frustration with him. I really don't think it is wishful thinking that he has more in him then he lets on. These little outbursts here and there, especially once he feels comfortable with people happen infrequent enough to say he can do anything, but frequently enough to say that he could be doing more.
I know he is feeling more comfortable with the folks at school. In fact, I would say that he downright has affection for them. Why? One action: pooping. Zach finally pooped at school for the first time about a month ago. That's when I knew the kid was feeling comfortable in his environment.
When Buddy died the Christmas of 2008, we were lost without a pet, and Sophia really wanted one. The following Easter, the Easter Bunny brought "Spot" and "Fluffy" to help fill the void. Zach has given these fish the occasional passing glance. And then there was last night, while I
was drawing the bath and Steve was at work. I came downstairs to see Zach sitting on the table in our foyer, totally enthralled and delighted. Sophia was yelling something like "Zach is petting the fish"to which she later explained she was saying "Zach is picking up the fish!". Here is my post from facebook to let you know what he was up to:Found Zach petting the fish, then realized he lifted the one fish out of its bowl and put it in with the other fish bowl. Two male bettas together in one bowl. Just call us the Michael Vics of the fish world.Apparently, he thought they looked lonely and would be better suited together. For those of you not in the know, bettas are also known as Siamese Fighting Fish, called this because two males put into a tank together will fight to the death. Anyhow, no fish were harmed - at least they have made it almost 24 hours after the incident without dying. Now that I think about it, perhaps this was just Zach's subtle way of trying to get me to change the nasty water they were living in. Everyone is a critic, even my ASD kid.
Monday, February 22, 2010
Back to school
Back to school they went. For Zachary: sobs. I am not going to lie: I am so glad that Steve had to deal with this and not me. Meanwhile, Sophia has been itching to get back to school.
Zach has been very clingy lately. We have noticed he seems extremely lethargic. He used to be such a high energy boy! I want them to run an iron test on him to check for anemia. It runs in both sides of the family. I want it checked. My one therapist suggested I have him checked for mono - her son was quite young when he got it. I remember my stint with mono was really terrible - and it took a pharmacist to diagnose it since the doctor blamed it on a sinus infection, gave me antibiotics, and it promptly gave me a reaction.
Meanwhile, we had a trip to the dentist this afternoon. Zach's first. I was sweating bullets. At school, they wrote a program and have been daily reviewing it with him on keeping his mouth open, letting someone touch his teeth, saying ahhh, etc. Well the work paid off - he did terrific! We work with him at home to get him to brush his teeth and floss, and he likes it. But there was a time when he wasn't so thrilled. I am so proud of my little bugger. I keep on imagining being in his shoes - he has no idea what we are talking about and all of the sudden we bring him to a strange place with lots of strange people, then we throw him in a weird chair that moves all around and shine a spotlight in his face. Then two strange people start poking around in his mouth. I wonder how he didn't clamp down!? LOL Anyhow, his teeth are beautiful shiny white now and cavity free. HURRAY! A good one for the books.
But then there was last night. I don't know what got into me. Besides this blog and the occasional therapist, I don't have the opportunity to chit chat much with people. I think I need to more. Probably the reason I blog is to get some things out of my system. Unfortunately, last evening, during our parenting class, I got revved up and let it loose. I am so embarrassed. I didn't even realize that I did that until Steve told me I hijacked the doctor's meeting. I am not even sure what happened or why. I just know that I pontificated on a few points about being given a hard time trying to get ABA services. I also discussed the reputation ABA has in our area and around the country. We discussed insurance coverage and insurance reform in New York state.
I am not really sure what got me going. The doctor showed an overview from the National Autism Center on a publication on Identification of Best Practices for Autism. I had seen a publication on this information before from one of our therapists. The review identified four categories of treatments: established, emerging, unestablished, and ineffective/harmful treatments. I think I may have been bothered about this information because of the insinuation that ABA is the only way to go. Mind you - we are doing ABA and I think it is the right thing for our current situation. But while ABA has shown to be the most effective treatment, its efficacy is still limited. It is not the silver bullet. With this in mind, I think if a family is attempting to help their child by pursuing another avenue, why chastise them? We have chosen to pursue ABA as our primary since its efficacy is higher for more children than other methods. We have also decided that Zach has other medical issues that may be impacting his symptoms of autism, and we are pursuing them using typical western medicine and integrative medical treatments to include supplements and dietary restrictions. We also attempt to address Zach's obvious sensory issues (wanting to jump, feel deep pressure, etc.) by allowing him to jump on a trampoline and teaching him the verbal requests for "squeeze" and "hug". These are the only sensory issues we have been able to observe that he needs. I also know that since we began the GFCF diet with Zachary, his spontaneous, eruptive vomiting has greatly diminished.
We have given plenty of opportunity for the medical establishment and "autism" experts to address our particular issues. We have to look at Zach as a unique case - because he is! Advocacy. We all need to learn to do this. We all need to learn to make those who affect us pay attention, make better decisions, and follow through. We all need to pay attention, make better decisions, and follow through, when dealing with others, too.
Zach has been very clingy lately. We have noticed he seems extremely lethargic. He used to be such a high energy boy! I want them to run an iron test on him to check for anemia. It runs in both sides of the family. I want it checked. My one therapist suggested I have him checked for mono - her son was quite young when he got it. I remember my stint with mono was really terrible - and it took a pharmacist to diagnose it since the doctor blamed it on a sinus infection, gave me antibiotics, and it promptly gave me a reaction.
Meanwhile, we had a trip to the dentist this afternoon. Zach's first. I was sweating bullets. At school, they wrote a program and have been daily reviewing it with him on keeping his mouth open, letting someone touch his teeth, saying ahhh, etc. Well the work paid off - he did terrific! We work with him at home to get him to brush his teeth and floss, and he likes it. But there was a time when he wasn't so thrilled. I am so proud of my little bugger. I keep on imagining being in his shoes - he has no idea what we are talking about and all of the sudden we bring him to a strange place with lots of strange people, then we throw him in a weird chair that moves all around and shine a spotlight in his face. Then two strange people start poking around in his mouth. I wonder how he didn't clamp down!? LOL Anyhow, his teeth are beautiful shiny white now and cavity free. HURRAY! A good one for the books.
But then there was last night. I don't know what got into me. Besides this blog and the occasional therapist, I don't have the opportunity to chit chat much with people. I think I need to more. Probably the reason I blog is to get some things out of my system. Unfortunately, last evening, during our parenting class, I got revved up and let it loose. I am so embarrassed. I didn't even realize that I did that until Steve told me I hijacked the doctor's meeting. I am not even sure what happened or why. I just know that I pontificated on a few points about being given a hard time trying to get ABA services. I also discussed the reputation ABA has in our area and around the country. We discussed insurance coverage and insurance reform in New York state.
I am not really sure what got me going. The doctor showed an overview from the National Autism Center on a publication on Identification of Best Practices for Autism. I had seen a publication on this information before from one of our therapists. The review identified four categories of treatments: established, emerging, unestablished, and ineffective/harmful treatments. I think I may have been bothered about this information because of the insinuation that ABA is the only way to go. Mind you - we are doing ABA and I think it is the right thing for our current situation. But while ABA has shown to be the most effective treatment, its efficacy is still limited. It is not the silver bullet. With this in mind, I think if a family is attempting to help their child by pursuing another avenue, why chastise them? We have chosen to pursue ABA as our primary since its efficacy is higher for more children than other methods. We have also decided that Zach has other medical issues that may be impacting his symptoms of autism, and we are pursuing them using typical western medicine and integrative medical treatments to include supplements and dietary restrictions. We also attempt to address Zach's obvious sensory issues (wanting to jump, feel deep pressure, etc.) by allowing him to jump on a trampoline and teaching him the verbal requests for "squeeze" and "hug". These are the only sensory issues we have been able to observe that he needs. I also know that since we began the GFCF diet with Zachary, his spontaneous, eruptive vomiting has greatly diminished.
We have given plenty of opportunity for the medical establishment and "autism" experts to address our particular issues.
Saturday, February 20, 2010
Parteee
Saturday's fundraiser was a success, in large part, due to the help of my family. Not only did they give of their time to come to the party, they provided wonderful food for the guests and financial contributions too. One niece even gave me the gift of her time as she helped me to decorate the barren walls of the house. My mother really came through, helping me don the naked windows with ready made window treatments that we ended up customizing to fit my windows. She worked really hard giving me input on how to decorate. Mom, in a past life, actually took some interior decorating courses, during her run with Sears. (Back in the day they actually used to do that!)
I particularly love her suggestion to put a table next to our grand window in the family room.
Steve and I love to sit there, eat or work on our laptops and look for deer that seem to continually cross our back lawn. My house has lost it's "just moved in look" - which is a great side effect from the party and a terrific birthday present to me.
The toys lined up along the fireplace hearth especially give that "lived in" look, don't you think?
Most importantly - we raised over $1400! I had a reach-for-the-stars goal of $1500 - but am very happy with this result, of course. This does not include those donations that people said they will mail in, so perhaps we will get closer to the goal. The stomach bug was running rampant, so 6 guests canceled at the last minute. Some people who I really wanted there didn't make it to the party, which was really sad for me. I tried not to let it dampen my spirits though. Those who did make an effort to be here seemed to have a really good time which made me feel terrific. The fact that the charity will get a little boost makes it totally worthwhile.
Zach did fantastic at the party! A year ago, he would have clung to me or Steve throughout the whole event. He ran through the crowd of legs, ate food, and we even had a mini playdate with a little guy, also 3 years old who so desperately wanted a little boy to play with. Great exposure to a social situation. Playdates were arranged for this week of vacation - an added bonus.
40 is the beginning of my new stage in life - and I am happy that I started it with trying to do something beneficial to others. Glad to see others out there care enough about me and the charity to make the effort. This sort of support really gives me a boost to figure out life in my new role as a stay at home mom to a special needs child and advocate. I hope I can learn more humility and the ability to give more selflessly in this next new phase. I am, after all, a work in progress, just like Zach!
I particularly love her suggestion to put a table next to our grand window in the family room.
Steve and I love to sit there, eat or work on our laptops and look for deer that seem to continually cross our back lawn. My house has lost it's "just moved in look" - which is a great side effect from the party and a terrific birthday present to me.The toys lined up along the fireplace hearth especially give that "lived in" look, don't you think?
Most importantly - we raised over $1400! I had a reach-for-the-stars goal of $1500 - but am very happy with this result, of course. This does not include those donations that people said they will mail in, so perhaps we will get closer to the goal. The stomach bug was running rampant, so 6 guests canceled at the last minute. Some people who I really wanted there didn't make it to the party, which was really sad for me. I tried not to let it dampen my spirits though. Those who did make an effort to be here seemed to have a really good time which made me feel terrific. The fact that the charity will get a little boost makes it totally worthwhile.
Zach did fantastic at the party! A year ago, he would have clung to me or Steve throughout the whole event. He ran through the crowd of legs, ate food, and we even had a mini playdate with a little guy, also 3 years old who so desperately wanted a little boy to play with. Great exposure to a social situation. Playdates were arranged for this week of vacation - an added bonus.
40 is the beginning of my new stage in life - and I am happy that I started it with trying to do something beneficial to others. Glad to see others out there care enough about me and the charity to make the effort. This sort of support really gives me a boost to figure out life in my new role as a stay at home mom to a special needs child and advocate. I hope I can learn more humility and the ability to give more selflessly in this next new phase. I am, after all, a work in progress, just like Zach!
Wednesday, February 17, 2010
Tears
If you have typical children, children with appropriate verbal ability, language ability, expressive and receptive language ability, you just cannot understand. I am so frustrated that Zach does not have this. I am so angry at how unfair this all is.
Once again, a friend had a facebook post about how her son will not qualify for services anymore. I had to read this comment:
I think doctors have really let us down. When we pursued Zach's chronic vomiting, we were told that some kids just puke. Oddly enough, we also heard that some second born boys just don't talk too. Recently, our doctor told us that a recent study indicated that kids on the spectrum have no higher incidence of GI issues. Yeah, well, after communicating with so many families, I can say, hogwash to this study. I think it is much like the studies that discuss seizures. Autism is a spectrum disorder, and perhaps there is a subset that these afflictions do have a higher incidence with.
Anyhow, I don't care about everyone else right now, I care about Zach. Vomiting is not just an inconvenience, he is in distress over it. I want to know what medically significant issues he has. I do not want to blame them for his autism, but I want to treat them nonetheless. I don't wish for Zach to talk just so that he can be conversational or social. I don't wish for Zach to talk so that he can tell me he loves me; I know, without a doubt, that he does.
Zach cried inconsolably for an hour tonight. It was not a tantrum. It was not behavioral. It was pain expressed the only way he knew how. I had no idea what was going on. He had no fever, he didn't fall or hurt himself. It appeared to come out of no where. I had asked him if it was his tummy. He echoed tummy back to me, while crying. I wasn't sure if this was him telling me his tummy was hurting, or if he was just being echoic. The only gesture he made was to bring my hand to below his eyes to wipe his tears away. In this moment I hate freaking autism as if it were the devil himself.
He looked me in the eyes with such intensity, he asked me to hold him ("up"), he asked for the comfort of his blanket ("blankie") , and then he threw himself on the ground, writhing in pain. We called the triage nurse at the pediatrician's office. They told me if he wasn't settled down within the hour, that we must bring him to the hospital, since he is unable to tell us what is going on. As I was on the phone, he erupted all over Steve. A half hour later he was settled down, and an hour later he was asleep for the night.
This was the second such incident like this this week. The other incident happened during the day, while I was with Sophia, and Zach was in the other room. He came running in the room screaming, he wouldn't let me hold him, he ran away from me when I attempted to console him. He cried so hard for so long, that Sophia was in tears herself. After around 30 minutes, he stopped, and he slowly returned to his own self. A few hours later, Sophia asked what the bump on Zach's head was. I looked on Zach's bang covered forehead only to notice that there was an egg there. He must have banged his head, but was unable to tell me.
A friend recently asked me if I was done "freaking out" over Zach's situation. This very irritating remark really makes me want to slap someone upside the head. This is not just some learning disorder, at least not for Zach. Some people have children on the spectrum that are very high functioning, and could likely tell their parents if they were not feeling well. That isn't our situation, at least not now. We are desperately trying to teach Zach to express himself and indicate how he feels. Our first step is by teaching body part identification. He knows head, eye, nose, ear, tummy, teeth, mouth, foot, and hand. Now to teach him "oww".
My heart has broken with these incidents this week. This isn't about pride. This is about trying to take care of my son, especially when he is hurting. Tears are bad enough, tears without meaning is the ultimate in frustration. What if he was having an appendicitis? Would I know?
Yes, I am still freaking out. Any parent who gives a damn about their child freaks out when they cannot tell you if they are in pain. If you have a child who doesn't have this issue, thank God. Then, take a second before you express foolish comments about thinking you could possibly understand what we are going through.
Once again, a friend had a facebook post about how her son will not qualify for services anymore. I had to read this comment:
You as parents should be so proud of yourselves for the efforts you have made!Pride? Once again I have to read an ignorant statement, not intended to be so, but hurtful to those of us who do so much and don't have the progress. But this isn't about pride. I do not have pride because of my children. I have fulfillment. I am not ashamed of my children. I love them with all my heart. I also will never feel like I can do enough for them, and yes, particularly Zach. It seems like the more I do and learn, the more I realize that I could do for him.
I think doctors have really let us down. When we pursued Zach's chronic vomiting, we were told that some kids just puke. Oddly enough, we also heard that some second born boys just don't talk too. Recently, our doctor told us that a recent study indicated that kids on the spectrum have no higher incidence of GI issues. Yeah, well, after communicating with so many families, I can say, hogwash to this study. I think it is much like the studies that discuss seizures. Autism is a spectrum disorder, and perhaps there is a subset that these afflictions do have a higher incidence with.
Anyhow, I don't care about everyone else right now, I care about Zach. Vomiting is not just an inconvenience, he is in distress over it. I want to know what medically significant issues he has. I do not want to blame them for his autism, but I want to treat them nonetheless. I don't wish for Zach to talk just so that he can be conversational or social. I don't wish for Zach to talk so that he can tell me he loves me; I know, without a doubt, that he does.
Zach cried inconsolably for an hour tonight. It was not a tantrum. It was not behavioral. It was pain expressed the only way he knew how. I had no idea what was going on. He had no fever, he didn't fall or hurt himself. It appeared to come out of no where. I had asked him if it was his tummy. He echoed tummy back to me, while crying. I wasn't sure if this was him telling me his tummy was hurting, or if he was just being echoic. The only gesture he made was to bring my hand to below his eyes to wipe his tears away. In this moment I hate freaking autism as if it were the devil himself.
He looked me in the eyes with such intensity, he asked me to hold him ("up"), he asked for the comfort of his blanket ("blankie") , and then he threw himself on the ground, writhing in pain. We called the triage nurse at the pediatrician's office. They told me if he wasn't settled down within the hour, that we must bring him to the hospital, since he is unable to tell us what is going on. As I was on the phone, he erupted all over Steve. A half hour later he was settled down, and an hour later he was asleep for the night.
This was the second such incident like this this week. The other incident happened during the day, while I was with Sophia, and Zach was in the other room. He came running in the room screaming, he wouldn't let me hold him, he ran away from me when I attempted to console him. He cried so hard for so long, that Sophia was in tears herself. After around 30 minutes, he stopped, and he slowly returned to his own self. A few hours later, Sophia asked what the bump on Zach's head was. I looked on Zach's bang covered forehead only to notice that there was an egg there. He must have banged his head, but was unable to tell me.
A friend recently asked me if I was done "freaking out" over Zach's situation. This very irritating remark really makes me want to slap someone upside the head. This is not just some learning disorder, at least not for Zach. Some people have children on the spectrum that are very high functioning, and could likely tell their parents if they were not feeling well. That isn't our situation, at least not now. We are desperately trying to teach Zach to express himself and indicate how he feels. Our first step is by teaching body part identification. He knows head, eye, nose, ear, tummy, teeth, mouth, foot, and hand. Now to teach him "oww".
My heart has broken with these incidents this week. This isn't about pride. This is about trying to take care of my son, especially when he is hurting. Tears are bad enough, tears without meaning is the ultimate in frustration. What if he was having an appendicitis? Would I know?
Yes, I am still freaking out. Any parent who gives a damn about their child freaks out when they cannot tell you if they are in pain. If you have a child who doesn't have this issue, thank God. Then, take a second before you express foolish comments about thinking you could possibly understand what we are going through.
Friday, February 12, 2010
Happy Birthday to Me
Have you ever had that feeling that this is the best I'm ever gonna do, this is the best I'm ever gonna feel... and it ain't that great? (from the movie City Slickers) Happy Birthday.
40 sure isn't starting off with the vibes of great things are to come, I'll tell you. I always remember the movie City Slickers where Billy Crystal's character receives a phone call in the middle of the night from his mother who goes on to tell in glorious terms the details of his birth, wishing him a happy birthday. Yea, well, I too was awakened in the middle of the night by a loved one, but it was certainly under different circumstances. First off, my mother would likely only call me on my birthday in the middle of the night only to tell me how painful labor was, not to recount the joyous moment of my birth. Sophia - Zach's guardian angel stopped in to say "I cannot sleep - he is making too much noise." She plops in bed with me, and I am off to find Zach running a fever of 102. OK - no other symptoms, I know the gig. Steve heard the hullabaloo and came in to find us, then retrieved the ibuprofen and got it into Zach. 30 minutes later, Zach's fever had gone down and he was off to sleep. Steve allowed me to sleep in to 7:45 (!!!) and off I went to get Sophia dressed, fed, brushed and on the bus.
I canceled school for the day for Zach, and promptly called the pediatrician's office. He (once again) has a pretty severe ear infection in one ear, and fluid in the other. My poor little guy! We have an upcoming appointment to the ENT March 4 to do a hearing screening and discuss options. We are considering having an ABR done, an auditory brainstem response test which is a physiologic test, and not the typical behavioral test. I am really thinking that tubes would be a good idea for a number of reasons, first off, stop these ear infections! He cannot tell me if he is in pain or where the pain is - so I have to base it on crankiness, fevers, and the occasional cold symptoms. Chronic ear infections can lead to hearing loss. Fluid in the ear can also create hearing difficulties.
Zach has recently been unable to say words that he had no difficulty with before. SLP doesn't seem to have an opinion on what this may be. I am wondering if his hearing is being impacted by the continual fluid and infections. Yale had recommended an ABR but I had read that it would require sedation which made me have some hesitation about having it done. The ENT's office has indicated that they may be able to conduct the ABR without sedation.
From the superintendent:
You are obviously blessed people. In all of my years of being a Superintendent I have never had something like this occur. Our buses travel just shy of 1,000,000 miles per year so multiply that by 10 years and that is a lot of miles!
I received an email from the school superintendent and the assistant superintendent about Sophia's incident. I am still trying to figure out why I am blessed that Sophia fell out of the bus. LOL With this sort of luck, I should probably stay away from the lottery. Anyhow, I had been hounding them for the report of the bus incident which took a ridiculous amount of time to get to us. Of course, the assistant superintendent shows up at 8:45 in the morning while I am still in my pajamas. I let Steve get the door, and I stood back and listened. I couldn't take it anymore, after I heard some of the rhetoric being spewed, I swallowed what little pride (and remember my vanity is already gone...) and went into the mudroom and introduced myself. As he described what happened, I told him that it was conjecture, they weren't sure what happened. And then I looked down, looked at all the cupcakes on my pajamas and wondered if people with purple pajamas with cupcakes are allowed to say words like "conjecture". He claimed the buses are inspected frequently , and blah blah blah. I asked about cameras on the bus and he said this bus didn't have one and that it wouldn't have helped if there was one. Again - does he really know this? Was he taking me seriously? Afterall I am just some dame, a stay at home mother nonetheless, who talks to school officials in her pajamas.
I went on to ask about the buzzer going off, according to him the buzzer is activated when the latch is all the way opened. This set alarms off in my head. (pun intended) The buzzer should be activated when the latch is pressed, not just when it is open. I honestly don't think that this guy really knew, but was stating what he thought to be true. I gotta tell you, I hate that. That's the engineering training coming out. If there is one thing I learned from my career, it's that it's OK to have theories, but facts need to have a basis, and decisions and strong statements should be based on facts. Anyhow, the guy went on to tell Steve and I that the district has implemented changes, specifically a policy change on loading the bus, where the emergency exit is the last seat loaded.
Steve and I will be inspecting the bus next week after winter break. I need to see what this all looks like.
OK, so Mr. Assistant Superintendent left likely thinking he thanks God his wife never answers the door in her pajamas, and off we went to get Zach checked out. And yes indeedee he has one ear with fluid and the other filled with pus. Poor little guy. We picked up the prescription and I have to say - the poor little guy has sure come a long way when taking medication. These are the things I have to think about when I get all caught up in the - "he can't say much" sort of rhythm. He takes medication now! And it doesn't end up on the family room floor!
The rest of the day was spent cleaning the house and cooking in preparation for the party. Steve worked hard to clean the basement so there was running room for the kids. I spent some time shopping at Marshall's looking for things to put on our empty walls. The phone rang all day with well wishes for my birthday and requests to sign up for credit card security protection.
It was just another day in paradise. Happy Birthday Me!
Wednesday, February 10, 2010
Glowing
I picked a fine day not to shave. Decided to try chiropractic. That involved around 72 x-rays (exaggeration). I feel I no longer require wearing jewelry since I now have a natural glow also known as radiation leftovers. The process of x-ray imaging also involved wearing a hospital gown, which meant exposing my winter white, and winter unshaven, appendages. Hurray for me. Vanity is so far gone, I can barely remember it.
Things are heating up around here, unfortunately, not literally. The upcoming Fundraiser/40th Birthday is just 3 days away and there is so much to do! I should have been cooking all week, but instead, I have been attending meetings and ... the good news is that the new website for FEAT of CNY has gone live! It has taken a lot of time, and is far from perfect or even complete, but it is up to date and more informational than ever. As for the party, I think we will be ordering pizza. A lot of pizza.
Zach has been interested in waterworks lately. Makes any structure
attached to plumbing a possibility for adventure, chaos, and property destruction. I have to laugh that a fellow parent of a child with "stuff" posted a similar post. Every time a bell rings, an angel gets it's wings. And every time there is something destroyed/broken/messed with or in need of going in the trash, this mother gets her camera. This all began with Ms. Sophia and the Crazy Cocoa Escapade of 2006. (Please note the dog is licking the unsweetened cocoa -YUM?!.) And now has continued with the Great Toilet Debacle of 2010. Actually, the serious offense was not captured, I am afraid. That is because the threat of Zach attempting to flush was high as I had Sophia in serious meltdown mode for some ungodly reason and couldn't watch the little villain while attempting to
soothe said sister, so I just unplugged and went. The offense? Half a roll of peeled toilet paper, a hair brush, and the looming threat of Zach with the car keys. The picture posted is of various hair ties, so if you see Sophia and her hair is a mess, you'll understand - both her brush and her hair ties have been laid to rest. The missing "my very favorite" brush and hair ties that lead to 2 hours of spontaneous tears combined with Sophia's sensory nightmare also known as coming near her head with a brush, comb, or shampoo only to hear rants and antics that rival only British Parliament in session, has lead us to consider dread locks.
Something notable of Zach, we have noticed him getting very cautious around stairs, clinging to the railing, or anyone walking near him. The PT approached me yesterday about adding in orthotic inserts to see if we can handle some of the toe walking. We noticed that heavier soled shoes help alleviate his desire to tiptoe - so we have been spending the big bucks on stride rite shoes. UUgghh. Thank God for the outlet mall nearby. We are going to see if we can find a pediatric orthopedist to help out. Donna has offered to go to our appointment with us. If you think you walk the extra mile at work, consider that. Her job is tough enough and she graciously offered. Yes, there are angels out there. Or for you non-religious types, people who make all the fools out there seem less important.
Things are heating up around here, unfortunately, not literally. The upcoming Fundraiser/40th Birthday is just 3 days away and there is so much to do! I should have been cooking all week, but instead, I have been attending meetings and ... the good news is that the new website for FEAT of CNY has gone live! It has taken a lot of time, and is far from perfect or even complete, but it is up to date and more informational than ever. As for the party, I think we will be ordering pizza. A lot of pizza.
Zach has been interested in waterworks lately. Makes any structure
attached to plumbing a possibility for adventure, chaos, and property destruction. I have to laugh that a fellow parent of a child with "stuff" posted a similar post. Every time a bell rings, an angel gets it's wings. And every time there is something destroyed/broken/messed with or in need of going in the trash, this mother gets her camera. This all began with Ms. Sophia and the Crazy Cocoa Escapade of 2006. (Please note the dog is licking the unsweetened cocoa -YUM?!.) And now has continued with the Great Toilet Debacle of 2010. Actually, the serious offense was not captured, I am afraid. That is because the threat of Zach attempting to flush was high as I had Sophia in serious meltdown mode for some ungodly reason and couldn't watch the little villain while attempting to
soothe said sister, so I just unplugged and went. The offense? Half a roll of peeled toilet paper, a hair brush, and the looming threat of Zach with the car keys. The picture posted is of various hair ties, so if you see Sophia and her hair is a mess, you'll understand - both her brush and her hair ties have been laid to rest. The missing "my very favorite" brush and hair ties that lead to 2 hours of spontaneous tears combined with Sophia's sensory nightmare also known as coming near her head with a brush, comb, or shampoo only to hear rants and antics that rival only British Parliament in session, has lead us to consider dread locks.Something notable of Zach, we have noticed him getting very cautious around stairs, clinging to the railing, or anyone walking near him. The PT approached me yesterday about adding in orthotic inserts to see if we can handle some of the toe walking. We noticed that heavier soled shoes help alleviate his desire to tiptoe - so we have been spending the big bucks on stride rite shoes. UUgghh. Thank God for the outlet mall nearby. We are going to see if we can find a pediatric orthopedist to help out. Donna has offered to go to our appointment with us. If you think you walk the extra mile at work, consider that. Her job is tough enough and she graciously offered. Yes, there are angels out there. Or for you non-religious types, people who make all the fools out there seem less important.
Tuesday, February 9, 2010
Zippers
Sophia is doing just fine. Have been in talks with the school district. Right now, they have instituted a "No kindergartner in the emergency exit aisle" rule on the bus district wide. I would also like a "No more than 2 children in the emergency exit aisle seat" rule. The bus has been inspected. They are looking into the buzzer operations for me - when it is activated, and if the buzzer was faulty on this bus. The transportation folks were supposed to send me a copy of the report and the principal is looking into when this was sent to me. The principal of Sophia's school has actually checked in with us periodically, which I really appreciate. She understands my concerns and is really respectful of my feelings. All in all, I am satisfied that they are taking this seriously. The principal has extended us an offer to go and check the actual bus for ourselves which Steve and I will do after the winter break. Still looking into whether to use the seat belts thing. I am sort of wondering if kids in the emergency exit should wear them. Anyhow, still don't have a definite opinion on the seat belt usage thing.
Zach is coming along now that we are feeling better around here. When grabbing my hand to bring me somewhere, he is now manding "Come" spontaneously and independently. Most of the time, I will ask him "What do you want?" and then he says "Come".
Something called intraverbals, which basically means word fill-ins is also coming along nicely. Zach is doing a few songs such as "No More Monkeys Jumping on the Bed", "You Are My Sunshine", "Twinkle, Twinkle", "Alphabet Song", "Row Row Row Your Boat", "Pop Goes the Weasel", "I Love you a Bushel and a Peck", "Thomas and His Friends", "If You are Happy and You Know It". He tends to only want to do the last word of every phrase, but we have been working on words mid-verse too. He enjoys this. He also completes a few phrase: "1-2-3" and he reponds "Go!" , "Ready-Set" his response "Go". There are a few others that I am unable to think of.
We are working on his "high 5" being not so wimpy. Zach is so gentle when he does this! He laughs when I take his arm to push it so that his hand slaps mine.
He seems to be interested in us clapping for him lately - he says "Yeah" and begins to clap his hands and smiles when you start to clap. I have been trying to do this when he sits on the potty, particularly when he actually pees on the potty.
As for motor skills - he is zippering his pajamas himself, pulling up his pants part of the way (I start first half, he does second), and pulling his shirt off over his head when I begin to take it off. I have begun trying to show him how to get his coat on. He will sometimes straightjacket himself (put the jacket on backwards). He recently went up to his cousin and gave her is sock and said "On" to her. This is really exciting for us!
His PT recently told us she has never seen him break out into an all out run. He generally is kind of lazy - wanting to be carried, not wanting to reach too far, etc. The problem, as is with many of Zach's delays, is not the ability, but the motivation. In an effort to work on this, we have decided to pursue private swimming lessons with Zach. Now to find a swim instructor who is familiar with young children with autism.
Something we are blessed with is that Zach has a diverse interest in toys. Some children on the spectrum perseverate on just one or two toys. In fact, Zach becomes bored rather easily, which makes that motivation thing kind of difficult for us, since something that works one day may only work for a few days.
A class we are taking on behavioral difficulties of children with developmental delays went over how to do preference assessments for children. This was pretty common sense type stuff for us - in fact the whole class hasn't provided a lot of insight to us. Not sure if this is because we have already read up on developmental and behavioral psychology or if it just sort of syncs up with our innate analytical thinking. Also - we currently aren't plagued with problem behavior. Some of the parents do seem to have difficulty understanding the concepts.
However, the class has given us an opporunity to meet other parents, and hear about the possible issues we could have in the future with school districts such as FBAs and BIPs (Functional Behavioral Assessment and Behavior Intervention Plans). I have found that these insights are more important since they result only from experience and no book really captures these real world issues. I hope to never have to blog about these things, but I can tell you that it is very sad what some parents have to go through to try and help their children get what they are legally entitled to.
The other nice thing about this class is that it gives the kids another opportunity to socialize and be in the company of new people. Part of the support for the class includes providing child care for us parents. How great is that? Zach initially cried for a few minutes during the first couple of classes- and as of last evenings class, didn't shed a tear. He is doing so much better with transitions! It's a nice assemblage of children - some are siblings who are typical, some have down syndrome or ADHD or other developmental delays. Sophia loves it.
So Zach can do zippers and loves to say the word zipper. That's where we are today.
Zach is coming along now that we are feeling better around here. When grabbing my hand to bring me somewhere, he is now manding "Come" spontaneously and independently. Most of the time, I will ask him "What do you want?" and then he says "Come".
Something called intraverbals, which basically means word fill-ins is also coming along nicely. Zach is doing a few songs such as "No More Monkeys Jumping on the Bed", "You Are My Sunshine", "Twinkle, Twinkle", "Alphabet Song", "Row Row Row Your Boat", "Pop Goes the Weasel", "I Love you a Bushel and a Peck", "Thomas and His Friends", "If You are Happy and You Know It". He tends to only want to do the last word of every phrase, but we have been working on words mid-verse too. He enjoys this. He also completes a few phrase: "1-2-3" and he reponds "Go!" , "Ready-Set" his response "Go". There are a few others that I am unable to think of.
We are working on his "high 5" being not so wimpy. Zach is so gentle when he does this! He laughs when I take his arm to push it so that his hand slaps mine.
He seems to be interested in us clapping for him lately - he says "Yeah" and begins to clap his hands and smiles when you start to clap. I have been trying to do this when he sits on the potty, particularly when he actually pees on the potty.
As for motor skills - he is zippering his pajamas himself, pulling up his pants part of the way (I start first half, he does second), and pulling his shirt off over his head when I begin to take it off. I have begun trying to show him how to get his coat on. He will sometimes straightjacket himself (put the jacket on backwards). He recently went up to his cousin and gave her is sock and said "On" to her. This is really exciting for us!
His PT recently told us she has never seen him break out into an all out run. He generally is kind of lazy - wanting to be carried, not wanting to reach too far, etc. The problem, as is with many of Zach's delays, is not the ability, but the motivation. In an effort to work on this, we have decided to pursue private swimming lessons with Zach. Now to find a swim instructor who is familiar with young children with autism.
Something we are blessed with is that Zach has a diverse interest in toys. Some children on the spectrum perseverate on just one or two toys. In fact, Zach becomes bored rather easily, which makes that motivation thing kind of difficult for us, since something that works one day may only work for a few days.
A class we are taking on behavioral difficulties of children with developmental delays went over how to do preference assessments for children. This was pretty common sense type stuff for us - in fact the whole class hasn't provided a lot of insight to us. Not sure if this is because we have already read up on developmental and behavioral psychology or if it just sort of syncs up with our innate analytical thinking. Also - we currently aren't plagued with problem behavior. Some of the parents do seem to have difficulty understanding the concepts.
However, the class has given us an opporunity to meet other parents, and hear about the possible issues we could have in the future with school districts such as FBAs and BIPs (Functional Behavioral Assessment and Behavior Intervention Plans). I have found that these insights are more important since they result only from experience and no book really captures these real world issues. I hope to never have to blog about these things, but I can tell you that it is very sad what some parents have to go through to try and help their children get what they are legally entitled to.
The other nice thing about this class is that it gives the kids another opportunity to socialize and be in the company of new people. Part of the support for the class includes providing child care for us parents. How great is that? Zach initially cried for a few minutes during the first couple of classes- and as of last evenings class, didn't shed a tear. He is doing so much better with transitions! It's a nice assemblage of children - some are siblings who are typical, some have down syndrome or ADHD or other developmental delays. Sophia loves it.
So Zach can do zippers and loves to say the word zipper. That's where we are today.
Friday, February 5, 2010
Watta week
I now know that I do indeed like living in chaos. Now a lot of people have probably already determined this about me, but I am a little on the slow side when it comes to self realization. What I have also decided, perhaps as a little rationalization or at least relief from this revelation, is that Zach is most likely benefiting from this. A lot of kids on the spectrum, since their receptive language skills are limited, need the comfort of a schedule and familiarity to figure out the rhythm of daily living. Some of the kids require schedules, but become so accustomed to them, they become rigid such that any change or unexpected tweek can send them looming into an autism abyss, otherwise known as the meltdown.
The only thing Zach has come to expect is that we are going to throw a lot of people and experiences at him, and that most of the time we will be there to help him figure it out. Now, Zach is only 3. As he matures the tantrums may evolve. They may not. Right now I am working on the theory that the more we expose him to in life (much like a NT child) the better he will be at handling all the variety life has to offer.
So, in my infinite wisdom, I decided that for my birthday this year, especially considering it is a bit of a milestone, that I would have a fundraiser party for our local FEAT group. Yes, I like chaos. I can barely get a shower in each day, and I am going to have people over to my house and try to get them to fork out some cash? Maybe they will take pity on us, think that all families with kids on the spectrum are as big of a mess as us, and dole out the Benjamins. Or more likely, they will shake their heads at the crazy tall lady with the cute kids, throw a few bucks in the till, and say: "At least she serves some good wine."
This week was a doozy. It was a typical running all over, getting ears checked, going to the chiropractor, schools, therapy, new private therapist added, tweeking the diet, advocacy work, homework, but also trying to clean the house for guests, decorate my barren walls so it doesn't look like we live in a cold war Soviet prison, menu planning sort of week.
Then there was the phone call on Wednesday. Here is my post on facebook, where I am obviously a little frantic:
No phone call from school when you are expecting your child home any minute is good, even when it starts with a: "this is [principal D] from [child's school] and first thing you should know is [insert child's name] is OK. "
I still have yet to receive the report, but this is what we know happened: Sophia was riding in the bus, sitting with two other friends in one seat, that was located in the exit row on the bus. While dropping a child off at a bus stop, the door unexpectedly opened, Sophia fell backwards out of the bus into the road, landing on her back thankfully where her backpack was. Sophia's teacher just happened to be behind the bus in her vehicle and ran up to Sophia. She got back on the bus, and was brave. She was taken back to the school, where I picked her up.
She appeared OK, and was shaken up for a few hours after the incident. I could not get in touch with dear husband (under my breath grumble grumble) so off I went to pick up Zach from school. While en route to Zach, we intermingled a trip to McDonalds to get a Happy Meal where she then appeared to return to her happy, joyous self. Zach's therapist came to babysit, while I took Sophia to get her checked out at the doctors. He did an exam and ran a test to check kidney function, and we were off home. A phone call to a niece to come and hang with Sophia while she napped (and I insited she periodically check her breathing), and I was off to take Zach to the next doctor's appointment. That evening, phone calls came in from school people, but not from the doctor which meant the lab work came back fine. Later, I collapsed into sleep.
Facebook is a great tool. People inquired about Sophia, and a childhood friend who now sits on the board at our school provided me with what she heard:
I will be 40 in one week's time. One of Zach's therapists hit this milestone just a little ahead of me this past November. According to her, she took it a little hard. Her comment to me: "I'm just not where I thought I would be".
She likely had no idea what impact this would have on me. With a masters degree in hand, many years of experience as an engineer; my health; my intelligent, humble, supportive husband; my beautiful family; and mostly my drive and desires; I can honestly say that at no time ever did I ever think that I would be a stay at home mom in the hometown I grew up in. I was the kid who wanted to change the world, then as I grew up, I wanted to charge the corporate ladder. Then I just wanted to be good at what I did, and then when I couldn't do that, I just wanted to take care of my business. As I look back, each time my universe shrunk from the world, all the way down to my family. I am certainly no where near where I ever thought I would be. I know my life sounds mundane to those fast trackers out there. I also know that taking care of my family is one of my core values that I will never be able to shake. I approach it with the zealousness as I did my first job. Actually, with even more charge. I also know to laugh, or not get too rattled, when things don't quite turn out the way I thought, which is almost always!
This party sort of feels like being able to attend your own funeral. Hopefully, I will get to see those who care show up and toast to my life, and there is a charitable organziation who will get a little in the kitty. [OK - as for the booze - yeah - we drink at funerals in this family, and at weddings, Christmas, and at 2 year old Zach's birthday party.] So yeah - like a funeral. The only difference is there is no grand prize for the husband in the form of a life insurance policy nor the freedom to go out and date the 25 year old cutie in the office. (sorry Steve)
Like many people, I want to make a difference. Change the world? Well, maybe a little piece of it. My birthday party with it's small philanthropic backdrop really does summarize what I am trying to do in this world. It's not grand, it's not Earth shaking, but it may help another out. I am 40 - and hopefully have a lot of years in me left to continue this. Maybe something small in size now, can grow to be something more, maybe not. There is so much out there to be done. I look forward to meeting its challenges. I am (kind of) smart, I care, and I am a persistent little bugger -I can make a difference. I thank God that Hilary made that remark to me a few months ago. I realize I may not be where I thought I would be either, I didn't accomplish what I thought I would, not living where I thought I would, not inventing what I thought I would, but I am doing just what I should be.
My summary:
10 came with an excitement of what I would be one day, at the time I wanted to be a violin teacher.
20 came with a depression that I was likely not to be a filthy rich super model with men hanging out just to shine my shoes nor was I going to be the magna/summa anything at graduation.
30 came with perplexity - lost Dad just prior, but I had a good job, a few suitors, and was not worrying about my hair and makeup nearly as much.
40 comes with the realization that there is a whole world out there that doesn't need people to climb or take charge, what it needs is people to care and to act.
The only thing Zach has come to expect is that we are going to throw a lot of people and experiences at him, and that most of the time we will be there to help him figure it out. Now, Zach is only 3. As he matures the tantrums may evolve. They may not. Right now I am working on the theory that the more we expose him to in life (much like a NT child) the better he will be at handling all the variety life has to offer.
So, in my infinite wisdom, I decided that for my birthday this year, especially considering it is a bit of a milestone, that I would have a fundraiser party for our local FEAT group. Yes, I like chaos. I can barely get a shower in each day, and I am going to have people over to my house and try to get them to fork out some cash? Maybe they will take pity on us, think that all families with kids on the spectrum are as big of a mess as us, and dole out the Benjamins. Or more likely, they will shake their heads at the crazy tall lady with the cute kids, throw a few bucks in the till, and say: "At least she serves some good wine."
This week was a doozy. It was a typical running all over, getting ears checked, going to the chiropractor, schools, therapy, new private therapist added, tweeking the diet, advocacy work, homework, but also trying to clean the house for guests, decorate my barren walls so it doesn't look like we live in a cold war Soviet prison, menu planning sort of week.
Then there was the phone call on Wednesday. Here is my post on facebook, where I am obviously a little frantic:
Just got a call from school - there was some sort of accident on Sophia's bus, she fell out the emergency door on the bus... not sure if what was moving ... they say she is OK - off to school to find out... prayers please.....
No phone call from school when you are expecting your child home any minute is good, even when it starts with a: "this is [principal D] from [child's school] and first thing you should know is [insert child's name] is OK. "
I still have yet to receive the report, but this is what we know happened: Sophia was riding in the bus, sitting with two other friends in one seat, that was located in the exit row on the bus. While dropping a child off at a bus stop, the door unexpectedly opened, Sophia fell backwards out of the bus into the road, landing on her back thankfully where her backpack was. Sophia's teacher just happened to be behind the bus in her vehicle and ran up to Sophia. She got back on the bus, and was brave. She was taken back to the school, where I picked her up.
She appeared OK, and was shaken up for a few hours after the incident. I could not get in touch with dear husband (under my breath grumble grumble) so off I went to pick up Zach from school. While en route to Zach, we intermingled a trip to McDonalds to get a Happy Meal where she then appeared to return to her happy, joyous self. Zach's therapist came to babysit, while I took Sophia to get her checked out at the doctors. He did an exam and ran a test to check kidney function, and we were off home. A phone call to a niece to come and hang with Sophia while she napped (and I insited she periodically check her breathing), and I was off to take Zach to the next doctor's appointment. That evening, phone calls came in from school people, but not from the doctor which meant the lab work came back fine. Later, I collapsed into sleep.
Facebook is a great tool. People inquired about Sophia, and a childhood friend who now sits on the board at our school provided me with what she heard:
The way I heard it was her backpack got caught on the exit door handle and when the poor thing moved, it opened the door. It's amazing she didn't get hurt & that the bus was stopped! Her Guardian Angel was looking over her!! The bus driver said Sophia is such a resilient, couragous & tough little girl as she bounced right up... See More, walked to the front of the bus & got back on!!!! Again, amazing!! In no way would I belittle this incident, but just want to reassure people that the buses' back doors aren't spontaneously opening up. My son rides the bus to/from school everyday and I often wondered why parents would fuss about having their children seatbelted as I would prefer my to be!!I responded (in my soapboxy preachy sort of way):
While that makes sense about the backpack, it's conjecture, no one really knows. Sophia said she didn't feel her backpack catch on the door/handle. For the record it was a side door of the bus. From what I heard, those buzzers should have been going off like crazy at the mere touch of the handle, so I am surprised it all could have happened that fast that it would make the buzzer go off, the door fly open, and she fell out. I am not saying that didn't happen, just not sure. For now - I think just like on an airplane, younger children should not sit in exit rows and I feel this should be policy. Also wondering about the 3 kids in one seat thing. I am still looking into seatbelt usage and if there have been any studies done on this. Risk mitigation is what I would like to see - the probability of certain types of accidents weighted against if seatbelts would help or hinder. There have been two ejections from buses in the past year at East Hill alone - want to make sure there won't be a 3rd. The number one thing we owe our kids is their safety - if danger is so easily preventable, let's prevent it!This gracious lady said she would let the board know. And there you have it - a great reason to be on facebook.
Would you mind letting the rest of the board know my thoughts? If I didn't speak up and let them know, and something else were to ever happen, I would feel just terrible.
I will be 40 in one week's time. One of Zach's therapists hit this milestone just a little ahead of me this past November. According to her, she took it a little hard. Her comment to me: "I'm just not where I thought I would be".
She likely had no idea what impact this would have on me. With a masters degree in hand, many years of experience as an engineer; my health; my intelligent, humble, supportive husband; my beautiful family; and mostly my drive and desires; I can honestly say that at no time ever did I ever think that I would be a stay at home mom in the hometown I grew up in. I was the kid who wanted to change the world, then as I grew up, I wanted to charge the corporate ladder. Then I just wanted to be good at what I did, and then when I couldn't do that, I just wanted to take care of my business. As I look back, each time my universe shrunk from the world, all the way down to my family. I am certainly no where near where I ever thought I would be. I know my life sounds mundane to those fast trackers out there. I also know that taking care of my family is one of my core values that I will never be able to shake. I approach it with the zealousness as I did my first job. Actually, with even more charge. I also know to laugh, or not get too rattled, when things don't quite turn out the way I thought, which is almost always!
This party sort of feels like being able to attend your own funeral. Hopefully, I will get to see those who care show up and toast to my life, and there is a charitable organziation who will get a little in the kitty. [OK - as for the booze - yeah - we drink at funerals in this family, and at weddings, Christmas, and at 2 year old Zach's birthday party.] So yeah - like a funeral. The only difference is there is no grand prize for the husband in the form of a life insurance policy nor the freedom to go out and date the 25 year old cutie in the office. (sorry Steve)
Like many people, I want to make a difference. Change the world? Well, maybe a little piece of it. My birthday party with it's small philanthropic backdrop really does summarize what I am trying to do in this world. It's not grand, it's not Earth shaking, but it may help another out. I am 40 - and hopefully have a lot of years in me left to continue this. Maybe something small in size now, can grow to be something more, maybe not. There is so much out there to be done. I look forward to meeting its challenges. I am (kind of) smart, I care, and I am a persistent little bugger -I can make a difference. I thank God that Hilary made that remark to me a few months ago. I realize I may not be where I thought I would be either, I didn't accomplish what I thought I would, not living where I thought I would, not inventing what I thought I would, but I am doing just what I should be.
My summary:
10 came with an excitement of what I would be one day, at the time I wanted to be a violin teacher.
20 came with a depression that I was likely not to be a filthy rich super model with men hanging out just to shine my shoes nor was I going to be the magna/summa anything at graduation.
30 came with perplexity - lost Dad just prior, but I had a good job, a few suitors, and was not worrying about my hair and makeup nearly as much.
40 comes with the realization that there is a whole world out there that doesn't need people to climb or take charge, what it needs is people to care and to act.
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