Mom is under the knife as I write this. Sisters and brother are all up at the hospital while I attend to nuttiness in our household. The doctors decided on doing an epidural with goofy pills instead of putting her under. In addition, they have givrn her Nexium the past few weeks and another anti-nausea drug today to ward of the problems she has had in the past with anesthesia. I am really hoping this helps.
The cancer has been the least of my mother's pain this past year - where as the her leg/hip/joint pain has been remarkably worse rendering her unable to drive and having to use two canes to walk. I do hope this hip replacement will do the trick. I am worried that it is not the true cause of her pain.
She is having the surgery even though she has lung cancer - however, she currently is cancer free. Her lung capacity is much improved - with a resting capacity as high as 96%! Still, surgery is risky, surgery and being 77 riskier, surgery and mega medications adds something,let's not forget her COPD and astham, and of course surgery and cancer.
She was not nervous and the staff, from the report my sister gave, has been terrific.
OK this just in - she is out of surgery. Things went as expected. I will go up to see her after ballet tonight.
Tuesday, October 27, 2009
Loss
Just found out that a former coworker lost a son a week ago, age 5. My heart is so heavy for this family.
Their son had contracted H1N1 - although initial tests didn't show it. He ended up with pneumonia. The child had asthma - but not severe. They are still awaitng autopsy results to indicate the actual cause of death.
Before they moved from Syracuse, they gave us the little jungle gym above. I went outside and noticed the leaves had fallen off most of the trees in our backyard. The view looked so sad to me. I wonder how they will get through these times. They havd an older daughter in second grade I believe.
There are some hurts you never get over, you have to learn to live with them. Are there people out there that don't have to go through these sorts of things? Indeed, growing up, we never had these issues - there were no disabilities in our family, no children dying. My parents were grateful for things, and they gave back to the community. They tried to express how lucky we were to us, but I am afraid I frequently did not understand. My mother would recall that her grandmother had lost children to disease, etc. People go on. They act like things are normal, they have to for the sake of the others.
Feeling pain in life comes in various degrees, from discomfort to unbearable. After having children, I can tell you that things I once found unbearable, are now merely uncomfortable. Anything involving my child is overwhelmingly difficult to bear. The thought of losing my children is unfathomable beyond my comprehension of pain. I know that Zach's disability alone is difficult for me.
I know I still struggle with the grief of Zach's disability. I dropped him off to school today, and they had disco music playing. He loves music. While watching him dance, it should have brought me joy. I am afraid it actually made me sad. He rocked back and forth from one leg to the other, clearly looking like a kid with autism. I recalled a year and a half ago being in church as the organ played the "Our Father" and everyone giggling as Zach not only got the beat, but moved his little tush like an Elvis impersonator. Anytime Zach heard music he would bust a move. Now he rocks back and forth. It's quite different. I wish I could quit thinking of "What might have been".
I recently saw a story about a central New York mother who actually adopted 8 children, most of them with disabilities. She chose to have disabled children. Mother of 8 - Inspirational This is an exceptional person. I know my grief is selfish. Most of the time it is because I feel so incompetent in handling the overall situation. This woman has taken on so much, she is so important to these children and to the community at large. I hope she realizes that. I thank her for her inspiration in my own situation.
Zach is here with me, and Sophia is too. We will enjoy life. Events in life such as a child's death should make those great times just that bit sweeter.
In the meantime, I will pray for his family. I will pray for Zach. I will do my best to be sensitive to others who may be going through the most tremendous losses there can be, of their children, whether in death or disability.
Friday, October 23, 2009
Where is he? Who is he?
I want someone to tell me where he is going to be. I want to believe all the mothers who tell me that he will be talking up a storm in a year's time. I want to believe he will call me Mom, maybe even tell me he loves me.
I don't know if I am giving up or accepting reality, but we have decided to scale back Zach's programs. Since transitioning into school, he appears to have lost some skills. I want to know why. There are medical tests, there are therapists, there are psychologists, all these people who are experts, but no one who can tell us what to expect. We can only look at what is going on.
There are no promises in any of this. The therapy type we have chosen had a 47% recovery rate in a major study many moons ago. Assuming identical conditions which we don't have, that still leaves 53% of no recovery. In the initial study some of the children were forever non-verbal and non-communicative.
The fact is throughout all of this, we have been beating ourselves up for the errors we know there are between this research that showed such positive outcomes, and our therapy choices and environment for Zach. Getting everything right seems close to impossible - there isn't enough money or people to help us achieve the perfect scenario. We feel bad for not trying every possible treatment that we have heard about. We feel bad about taking time for ourselves to do something like go for a run or watch a half hour of TV. We feel that somehow in all of this, it is our failings that have been creating the lack of progress in Zachary's development.
Perhaps he will be who he is, and we are supposed to accept that, without thinking we can contribute to his successes. Is it our egos getting in the way? Our feelings of helplessness since no one, especially the "experts" can give us any idea of what to expect?
Every now and again when I find myself exasperated with where he is at - I try and take a deep breath, and take a moment to just enjoy him, smile at him, make him giggle, hold him. I then go off to my laptop at some later time, write down a brief summation of what is going on, share it with you all, and cry. I want to accept and love Zachary for who he is, my sweet sweet boy, but I just cannot replace the longing in my heart to have him show some notable progress, and we are just not getting that right now. This isn't about him saying my name, I know he knows who I am. This isn't about his saying "I love you", I know he does with every cuddle he gives me and those long passionate kisses of his! I just want to have the joy of seeing him develop, even if it is in his own way, and I don't feel like we have that right now. I don't care if he is slower than the other kids. I got over that a long time ago. I don't care if he even keeps up with the other kids with autism right now. I just want to see some glimmer of light that he is on a path to somewhere. I would love to have someone tell me he is going to progress- and in all honesty, we have a lot of people who do tell us that (chiropractors, therapists, homeopaths, other parents) but I don't believe them. In some of these cases, they are likely trying to give us hope, perhaps in others they are trying to sell their wares.
I pray that the longing in my heart to hear him functionally speak go away if that is not what is meant to be. I pray that every time I see a child his age, or younger, effectively communicate with their parent, that I don't feel a nauseous feeling in my stomach.
There are experts, there are specialists, there are researchers. And no one has any answers. No one can predict what he will be able to do.
The longing in my heart brings me back to a different time in my life. I was freshly 30, had lost my father the year prior, and when looking back at a decade of non-stop boyfriends, I realized that I was wasting my life chasing after something that I shouldn't. I prayed with a friend and asked God that if I was not intended to be married, and in a committed relationship, that he take the longing in my heart away. Within a few weeks, for the first time ever in my life, I broke up with my boyfriend while still having very strong feelings, but realizing the toxicity of the relationship. It was the first time in my life that I felt secure by myself and confident that life was OK without having a partner. I felt so empowered by my new sense of self, that I went and purchased luggage and had it monogrammed. Well, like the jokester He is, a few months later, I met Steve. A few months after that Steve and I were dating. And a year after that we were married. And now I have a complete set of Eddie Bauer luggage with the wrong monogram on it. That luggage has navigated its way through the United States, Canada, France, England, Switzerland, Belgium, Poland, and Germany. Who cares about the monogram.
I wonder what tricks God has up his sleeve with Zach. Will I realize that he is who he is, and that my love for him is enough? Should I accept that he has autism, and that he will be who he is, regardless of intervention? Do I continue to pursue the details of this disorder and how they pertain to him? Do I continue to fight the insurance companies, school districts, and others who refuse to pay for diagnosis and treatments?
Where is he on this journey? Will he ever be able to tell me how he feels? Could he be a dentist one day?
I pray that this new perspective on his therapy give us that pinpoint of light we so desperately want to see.
I don't know if I am giving up or accepting reality, but we have decided to scale back Zach's programs. Since transitioning into school, he appears to have lost some skills. I want to know why. There are medical tests, there are therapists, there are psychologists, all these people who are experts, but no one who can tell us what to expect. We can only look at what is going on.
There are no promises in any of this. The therapy type we have chosen had a 47% recovery rate in a major study many moons ago. Assuming identical conditions which we don't have, that still leaves 53% of no recovery. In the initial study some of the children were forever non-verbal and non-communicative.
The fact is throughout all of this, we have been beating ourselves up for the errors we know there are between this research that showed such positive outcomes, and our therapy choices and environment for Zach. Getting everything right seems close to impossible - there isn't enough money or people to help us achieve the perfect scenario. We feel bad for not trying every possible treatment that we have heard about. We feel bad about taking time for ourselves to do something like go for a run or watch a half hour of TV. We feel that somehow in all of this, it is our failings that have been creating the lack of progress in Zachary's development.
Perhaps he will be who he is, and we are supposed to accept that, without thinking we can contribute to his successes. Is it our egos getting in the way? Our feelings of helplessness since no one, especially the "experts" can give us any idea of what to expect?
Every now and again when I find myself exasperated with where he is at - I try and take a deep breath, and take a moment to just enjoy him, smile at him, make him giggle, hold him. I then go off to my laptop at some later time, write down a brief summation of what is going on, share it with you all, and cry. I want to accept and love Zachary for who he is, my sweet sweet boy, but I just cannot replace the longing in my heart to have him show some notable progress, and we are just not getting that right now. This isn't about him saying my name, I know he knows who I am. This isn't about his saying "I love you", I know he does with every cuddle he gives me and those long passionate kisses of his! I just want to have the joy of seeing him develop, even if it is in his own way, and I don't feel like we have that right now. I don't care if he is slower than the other kids. I got over that a long time ago. I don't care if he even keeps up with the other kids with autism right now. I just want to see some glimmer of light that he is on a path to somewhere. I would love to have someone tell me he is going to progress- and in all honesty, we have a lot of people who do tell us that (chiropractors, therapists, homeopaths, other parents) but I don't believe them. In some of these cases, they are likely trying to give us hope, perhaps in others they are trying to sell their wares.
I pray that the longing in my heart to hear him functionally speak go away if that is not what is meant to be. I pray that every time I see a child his age, or younger, effectively communicate with their parent, that I don't feel a nauseous feeling in my stomach.
There are experts, there are specialists, there are researchers. And no one has any answers. No one can predict what he will be able to do.
The longing in my heart brings me back to a different time in my life. I was freshly 30, had lost my father the year prior, and when looking back at a decade of non-stop boyfriends, I realized that I was wasting my life chasing after something that I shouldn't. I prayed with a friend and asked God that if I was not intended to be married, and in a committed relationship, that he take the longing in my heart away. Within a few weeks, for the first time ever in my life, I broke up with my boyfriend while still having very strong feelings, but realizing the toxicity of the relationship. It was the first time in my life that I felt secure by myself and confident that life was OK without having a partner. I felt so empowered by my new sense of self, that I went and purchased luggage and had it monogrammed. Well, like the jokester He is, a few months later, I met Steve. A few months after that Steve and I were dating. And a year after that we were married. And now I have a complete set of Eddie Bauer luggage with the wrong monogram on it. That luggage has navigated its way through the United States, Canada, France, England, Switzerland, Belgium, Poland, and Germany. Who cares about the monogram.
I wonder what tricks God has up his sleeve with Zach. Will I realize that he is who he is, and that my love for him is enough? Should I accept that he has autism, and that he will be who he is, regardless of intervention? Do I continue to pursue the details of this disorder and how they pertain to him? Do I continue to fight the insurance companies, school districts, and others who refuse to pay for diagnosis and treatments?
Where is he on this journey? Will he ever be able to tell me how he feels? Could he be a dentist one day?
I pray that this new perspective on his therapy give us that pinpoint of light we so desperately want to see.
Wednesday, October 21, 2009
Up All Night
When I was single, the phrase "up all night" indicated a night filled with adventure, partying, or romance. At age 39, with 2 kids, and the special needs stuff, well, the phrase "up all night" takes on a whole new meaning, and none of it particularly fun.
Yesterday was a typical day of perpetual motion. Most of the perpetual motion was taking Zach to school ( a 25 minute drive) coming back to Camillus, and back off to the east to take Mom to her doctors appointment. This doctor's appointment was to see if the pulmonologist would clear Mom for her upcoming hip replacement surgery. That appointment took 2 hours - we discussed the current state of Mom's cancer, and they did in fact clear her. Gotta love the case management of the medical field - the office had her down for having surgery for November 30th - her actual surgery date is October 27th. It's non-stop, correcting these sort of mistakes between the pulmonologist, cardiologist, dermatologist, oncologist, radiologist, and surgeons. Electronic record keeping would really be great for this of course - but there are big issues regarding privacy and HIPAA laws, standards, and security. Companies with the appropriate background to make this happen all want to make big money off of it, creating proprietary hardware/software/middleware thus I don't expect to see it happen anytime soon. This is not a technology problem - our government and several of its agencies, particularly the military, have been creating secure networks and applications for decades. Greed always gets in the way.
Anyhow, good news that Mom's cancer is still at bay for now, and she is doing OK with her COPD. The pulmonologist recommended Mom get the flu shot before surgery, and ten minutes prior to this statement, the office ran out of the vaccine. They sent us off to the downtown office for her to get it there and that we did after picking up Zach from school. Add 45 minutes of extra time to the schedule. Oh well. Thumbs up for surgery, and now let's pray that she manages to bounce back from the surgery quickly and that it actually takes care of the pain she has been in for the past year.
Some of the perpetual motion from yesterday was because I had committed Sophia to a ballet class - and we needed to find her attire: leotard, tights, ballet shoes, tap shoes. Wal-Mart came in particularly handy with the leotard business, however, we ended up having to drive around for the ballet shoes. But alas, she was fitted head to toe in pink and looked as sweet as a pea. Straight from the ballet shoe store we went off to class.
Of course, no where I go these days can allow me to escape autism. While in the class, in walks a mom with her daughter that I quickly recognized. Karla works at my former employer, and we quickly began chatting about all that was up. After hearing me talk to her about Zach and some of the other families we have met, a woman who was listening to our conversation chimed in and told us she was a special education teacher in our school district. She then went on to to tell me she has a 3 year old with autism. I was a little confused by the end of the conversation because her son is verbal, gestures, doesn't have behavioral or major sensory issues. In fact, they have not pursued a diagnosis. He is getting some services and she works with him. She has more background than me being a special ed teacher, but I was still perplexed by the fact that she didn't pursue formal diagnosis if he did indeed have autism. Perhaps after seeing years of children with special needs and how the system works, she realizes the pitfalls to diagnosis.
As well as not being able to avoid autism, we also cannot seem to avoid chaos. As I packed Sophia in the car in her cute little pink outfit, I slammed the door shut and saw the look on Sophie's face. You got it - her hand was in between the car and the car door. Off I went driving 70 miles an hour home to get an ice pack. Her hand looked fine, I called the triage at the pediatrician's office, and they said it was likely soft tissue damage based on what I described. Anti-inflammatories and keeping an eye on it were all they recommended.
After the great mashed hand incident of 2009, I managed to get the kids into pajamas and to bed. Eventually, I fell asleep alongside them, until, 1 am. I woke up to Zach staring me in the face. He didn't look happy. He could not sleep. He wasn't fooling around, he just could not sleep. I felt bad for him because it really did not come off as him doing it on purpose. I changed his diaper, rubbed his back, snuggled with him. He finally fell back asleep at around 5ish.
I have a cold that feels as it may be turning into a sinus infection, little sleep, and a meeting where I will be a speaker this afternoon, driving cross town twice a day for Zach's school, driving the other way across town to take Zach to a doctor's appointment, plus afternoon therapy - another perpetual motion day here at the Morphet home all to be culminated by the irony of no sleep - tomorrow is Zach's next sleep deprived EEG. That's right folks, we will be purposely keeping Zach up tonight for his test tomorrow.
Yesterday was Steve and my 8th wedding anniversary. Now that I think about it, it was filled with adventure (trying to get Sophia's ballet gear), partying ( Sophia, Zach and I played computer games for an hour and a half together), and romance (I was snuggled and kissed many times last night). All this fun without Steve who is out of town on business. What is all the whining about?
Yesterday was a typical day of perpetual motion. Most of the perpetual motion was taking Zach to school ( a 25 minute drive) coming back to Camillus, and back off to the east to take Mom to her doctors appointment. This doctor's appointment was to see if the pulmonologist would clear Mom for her upcoming hip replacement surgery. That appointment took 2 hours - we discussed the current state of Mom's cancer, and they did in fact clear her. Gotta love the case management of the medical field - the office had her down for having surgery for November 30th - her actual surgery date is October 27th. It's non-stop, correcting these sort of mistakes between the pulmonologist, cardiologist, dermatologist, oncologist, radiologist, and surgeons. Electronic record keeping would really be great for this of course - but there are big issues regarding privacy and HIPAA laws, standards, and security. Companies with the appropriate background to make this happen all want to make big money off of it, creating proprietary hardware/software/middleware thus I don't expect to see it happen anytime soon. This is not a technology problem - our government and several of its agencies, particularly the military, have been creating secure networks and applications for decades. Greed always gets in the way.
Anyhow, good news that Mom's cancer is still at bay for now, and she is doing OK with her COPD. The pulmonologist recommended Mom get the flu shot before surgery, and ten minutes prior to this statement, the office ran out of the vaccine. They sent us off to the downtown office for her to get it there and that we did after picking up Zach from school. Add 45 minutes of extra time to the schedule. Oh well. Thumbs up for surgery, and now let's pray that she manages to bounce back from the surgery quickly and that it actually takes care of the pain she has been in for the past year.
Some of the perpetual motion from yesterday was because I had committed Sophia to a ballet class - and we needed to find her attire: leotard, tights, ballet shoes, tap shoes. Wal-Mart came in particularly handy with the leotard business, however, we ended up having to drive around for the ballet shoes. But alas, she was fitted head to toe in pink and looked as sweet as a pea. Straight from the ballet shoe store we went off to class.
Of course, no where I go these days can allow me to escape autism. While in the class, in walks a mom with her daughter that I quickly recognized. Karla works at my former employer, and we quickly began chatting about all that was up. After hearing me talk to her about Zach and some of the other families we have met, a woman who was listening to our conversation chimed in and told us she was a special education teacher in our school district. She then went on to to tell me she has a 3 year old with autism. I was a little confused by the end of the conversation because her son is verbal, gestures, doesn't have behavioral or major sensory issues. In fact, they have not pursued a diagnosis. He is getting some services and she works with him. She has more background than me being a special ed teacher, but I was still perplexed by the fact that she didn't pursue formal diagnosis if he did indeed have autism. Perhaps after seeing years of children with special needs and how the system works, she realizes the pitfalls to diagnosis.
As well as not being able to avoid autism, we also cannot seem to avoid chaos. As I packed Sophia in the car in her cute little pink outfit, I slammed the door shut and saw the look on Sophie's face. You got it - her hand was in between the car and the car door. Off I went driving 70 miles an hour home to get an ice pack. Her hand looked fine, I called the triage at the pediatrician's office, and they said it was likely soft tissue damage based on what I described. Anti-inflammatories and keeping an eye on it were all they recommended.
After the great mashed hand incident of 2009, I managed to get the kids into pajamas and to bed. Eventually, I fell asleep alongside them, until, 1 am. I woke up to Zach staring me in the face. He didn't look happy. He could not sleep. He wasn't fooling around, he just could not sleep. I felt bad for him because it really did not come off as him doing it on purpose. I changed his diaper, rubbed his back, snuggled with him. He finally fell back asleep at around 5ish.
I have a cold that feels as it may be turning into a sinus infection, little sleep, and a meeting where I will be a speaker this afternoon, driving cross town twice a day for Zach's school, driving the other way across town to take Zach to a doctor's appointment, plus afternoon therapy - another perpetual motion day here at the Morphet home all to be culminated by the irony of no sleep - tomorrow is Zach's next sleep deprived EEG. That's right folks, we will be purposely keeping Zach up tonight for his test tomorrow.
Yesterday was Steve and my 8th wedding anniversary. Now that I think about it, it was filled with adventure (trying to get Sophia's ballet gear), partying ( Sophia, Zach and I played computer games for an hour and a half together), and romance (I was snuggled and kissed many times last night). All this fun without Steve who is out of town on business. What is all the whining about?
Monday, October 19, 2009
Dinner at the Morphet's House
Besides our goofy food situation, dinner is never quiet or without incident around here. Usually Sophia is saying something interesting. Last night I got the line:
Don't worry Momma, your pants are going to save you.What does this mean? I have no clue. They don't always make sense, but they almost always are amusing.
** Pictures from this past weekend at Critz Farms autism event.
Saturday, October 17, 2009
Happy Birthday Daddy!
Chef Sophia helping to make chocolate cupcakes for Daddy's birthday.
The birthday card made by Sophia and Zach.
After 11 months of waiting, we just received notice that our insurance company will not pay for the Zachary's evaluation and diagnosis at the Yale Child Studies Center. They had no medical reason for denying the claim, and their excuse was that they don't pay for diagnosis coverage for determining Early Intervention coverage. Huh? We weren't doing this just for EI's sake - we were doing it for getting a diagnosis plain and simple.
I was irate at their flimsy excuse - one so apparent that they could not come up with anything good that they tried to figure out some way to deny it that seemed reasonable, although there is NO reasonable reason to deny it other than they are cheap ^^*$%s.
So as I stammered a response to this letter, Sophia says the following:
You'll show the emperors you're a butt breaker.
I laughed so hard that I thanked God right then and there that I have both my children in my life.
Have yet to tell Daddy the news - didn't want to ruin his birthday. I suppose if he reads this post - he'll likely find out.
Good bye $4000. Happy Birthday Steve!
Friday, October 16, 2009
Forecasting
Due to a death in the family, and a very sad one at that, we have flown my mother-in-law back up to Syracuse. She was home only for one week after being with us for two months! She has decide to stay around since we have a sleep deprived EEG for Zach next week, and my mother's hip replacement is the following week, plus our usual therapy/school/ballet lessons/homework stuff.
Having my MIL has allowed us some luxury again of being able to attend parent meetings. Zach is one of the younger children in these groups. This means we get to see what may be coming down the pike. My heart usually breaks over and over again at these meetings.
At one meeting, involving much older children, the parents were discussing how to handle behavior. One child was consistently going into the main bathroom in the house, and screaming "blood curdling screaming" according to mom, for an hour at a time. This is so hard because the child is not violent or aggressive, so should it be corrected? When asked why he does it, the child says becuase he was angry or frustrated. We all like to scream once in awhile, understandable. However, hours worth of it is hard on the parents, and the parents are concerned what the neighbors are thinking! We discussed trying to add a timer and constraining the screaming sessions to no more than 15 minutes. Perhaps, even trying to fade it back one minute at a time if he did respond to the timer.
Another issue mentioned - autism boys and holding their "gear" - apparently very common and frowned upon in a school environment. The child's psychiatrist told the parents to make a bear from the Build A Bear workshop and add weights to it. Well, I am no behavior analyst - but I think the object of the redirection is likely going to raise a few eyebrows when the child is 15. One parent said they sent their son home with some sort off lego figure they made. The child could carry it in his pocket and it has been very helpful. I really liked the idea - it was so great that the parents found something that worked for them. Would it work for the other family?
Then came another family posing their issues to the group. Their son, after several years of being told ADHD, was newly diagnosed at age 7 - PDD-NOS. He was riding a typical bus and apparently the kids were picking on him, although the child didn't perceive it that way. As I have read with a lot of children on the spectrum, they are excited to receive attention from peers and refer to the kids who taunt them as "friends". They do not understand the ill will of some of these kids. So, this little boy's "friend" had scissors on the bus, and said to the little boy "I am going to cut your backpack, OK?" . The mean little sh*t proceeded to cut the backpack up. When the child arrived home, he said nothing. When mom discovered the damaged backpack later that evening, she asked her son what happened. He said "My friend on the bus cut it up". So the school district was notified and then, well, nothing; they didn't respond. The principal insisted that couldn't have happened. Meanwhile, on the playground, this child was being surrounded by kids (one of them the backpack cutter) and the kids were taking turns spitting on him. After mom found out about this, she confronted the school and asked where the one-on-one aid was during these events (as stipulated in his IEP for during recess). The school's response? We don't have enough staff for this. But it is in his IEP!!!! After 3 months of the parents not letting up, they finally met with the backpack cutter and his parents, and the boy admitted to cutting the backpack. He was told not to do it again. And that was that. No major reprimand. Beyond having mean and inappropriate behavior- what about having scissors on the bus!?!? Hello?
The story gets harder to hear as the parents then discuss how they requested to ride the bus with the child, and the school district refused, saying it was against policy. After pushing, they finally got a special needs bus to pick up their son. While on his new special needs bus, a Camillus fire department truck proceeded to run a red light, strike the child's bus, and the child was ejected from the bus on West Genesee Street - a fairly major and busy road way in our town. (Mind you the fire dept truck did not have its lights or sirens on either.) The child immediately got up and ran across the road and got back into his seat, and as they later found out "because that is where I am supposed to sit". The parents were not immediately notified that the child had been ejected from the bus. They were confused about the extent of his injuries when they first saw him. No one offered up the information. As mom recalled the story to our group, dad - a 6 foot two, 250 pound guy, in an athletic sweatsuit who looked like he could pretty much take anyone on and win, proceeded to cry. Talk about break your heart. Although I am not a guy, I believe I had a pretty good idea what this guy was feeling. As a dad - his role is to protect his family, and here he is, helpless, and exacerbated by the school district and their inability to protect his son combined with their purposely poor communication with the family.
Of course, lawyers were suggested in dealing with all these cases. But most of the families are working class folks in a bad economy who don't feel they can afford that.
These stories, and other stories that were told that evening, were very hard to listen to. The consistency, regardless of school district, was even worse. I think Steve and I had a glimpse of our possible future, and it really was hard to hear.
A family group meeting I went to later was a lot less heart wrenching- probably because the kids were mostly younger and not entered into school yet. They were, nonetheless, frustrated with behaviors and other situations. Two of the moms talked about their sons' tantrums. Now that their children were getting older, and heavier (50-60 pounds) it was getting a lot harder to contain the kids during public meltdowns. They were discussing that slowly and surely they were figuring out the triggers of their sons meltdowns. However, some things just seem unavoidable. What do you do when they run out of chicken nuggets at McDonalds and your kid is a flailing mass on the ground with 25 people all staring at you with looks of horror and disgust on their faces? Injuries sustained by these mothers are pretty scary - bites, scratches, bruises.
These moms were encouraging me that Zach will one day speak, and that their sons were a lot like Zach when they were 3 and not producing a lot of language. They recalled the "aha" moment when their kids developed language functionally. It was wild to hear how the kids went from non-verbal to speaking in grammatically correct appropriate sentences within a year's span. This of course gave me hope. At some point, however, I noticed a mother sitting quietly in the group. I sat next to her and asked her about her son. She was a single mom - and her son was still non-verbal even at 4 1/2. She probably was wincing at the mother's encouragement that Zach will be like their sons. Yes, there is a spectrum.
Steve doesn't have as much experience as I do hearing the stories from other parents. This certainly is very eye-opening for him. At least we are lucky enough to see the battles we are likely face in the future - many of these parents had no idea if what they were dealing with was common place or not.
Are these stories our future? Much like the Syracuse weather, it's almost impossible to forecast - but we know there will be snow.
Having my MIL has allowed us some luxury again of being able to attend parent meetings. Zach is one of the younger children in these groups. This means we get to see what may be coming down the pike. My heart usually breaks over and over again at these meetings.
At one meeting, involving much older children, the parents were discussing how to handle behavior. One child was consistently going into the main bathroom in the house, and screaming "blood curdling screaming" according to mom, for an hour at a time. This is so hard because the child is not violent or aggressive, so should it be corrected? When asked why he does it, the child says becuase he was angry or frustrated. We all like to scream once in awhile, understandable. However, hours worth of it is hard on the parents, and the parents are concerned what the neighbors are thinking! We discussed trying to add a timer and constraining the screaming sessions to no more than 15 minutes. Perhaps, even trying to fade it back one minute at a time if he did respond to the timer.
Another issue mentioned - autism boys and holding their "gear" - apparently very common and frowned upon in a school environment. The child's psychiatrist told the parents to make a bear from the Build A Bear workshop and add weights to it. Well, I am no behavior analyst - but I think the object of the redirection is likely going to raise a few eyebrows when the child is 15. One parent said they sent their son home with some sort off lego figure they made. The child could carry it in his pocket and it has been very helpful. I really liked the idea - it was so great that the parents found something that worked for them. Would it work for the other family?
Then came another family posing their issues to the group. Their son, after several years of being told ADHD, was newly diagnosed at age 7 - PDD-NOS. He was riding a typical bus and apparently the kids were picking on him, although the child didn't perceive it that way. As I have read with a lot of children on the spectrum, they are excited to receive attention from peers and refer to the kids who taunt them as "friends". They do not understand the ill will of some of these kids. So, this little boy's "friend" had scissors on the bus, and said to the little boy "I am going to cut your backpack, OK?" . The mean little sh*t proceeded to cut the backpack up. When the child arrived home, he said nothing. When mom discovered the damaged backpack later that evening, she asked her son what happened. He said "My friend on the bus cut it up". So the school district was notified and then, well, nothing; they didn't respond. The principal insisted that couldn't have happened. Meanwhile, on the playground, this child was being surrounded by kids (one of them the backpack cutter) and the kids were taking turns spitting on him. After mom found out about this, she confronted the school and asked where the one-on-one aid was during these events (as stipulated in his IEP for during recess). The school's response? We don't have enough staff for this. But it is in his IEP!!!! After 3 months of the parents not letting up, they finally met with the backpack cutter and his parents, and the boy admitted to cutting the backpack. He was told not to do it again. And that was that. No major reprimand. Beyond having mean and inappropriate behavior- what about having scissors on the bus!?!? Hello?
The story gets harder to hear as the parents then discuss how they requested to ride the bus with the child, and the school district refused, saying it was against policy. After pushing, they finally got a special needs bus to pick up their son. While on his new special needs bus, a Camillus fire department truck proceeded to run a red light, strike the child's bus, and the child was ejected from the bus on West Genesee Street - a fairly major and busy road way in our town. (Mind you the fire dept truck did not have its lights or sirens on either.) The child immediately got up and ran across the road and got back into his seat, and as they later found out "because that is where I am supposed to sit". The parents were not immediately notified that the child had been ejected from the bus. They were confused about the extent of his injuries when they first saw him. No one offered up the information. As mom recalled the story to our group, dad - a 6 foot two, 250 pound guy, in an athletic sweatsuit who looked like he could pretty much take anyone on and win, proceeded to cry. Talk about break your heart. Although I am not a guy, I believe I had a pretty good idea what this guy was feeling. As a dad - his role is to protect his family, and here he is, helpless, and exacerbated by the school district and their inability to protect his son combined with their purposely poor communication with the family.
Of course, lawyers were suggested in dealing with all these cases. But most of the families are working class folks in a bad economy who don't feel they can afford that.
These stories, and other stories that were told that evening, were very hard to listen to. The consistency, regardless of school district, was even worse. I think Steve and I had a glimpse of our possible future, and it really was hard to hear.
A family group meeting I went to later was a lot less heart wrenching- probably because the kids were mostly younger and not entered into school yet. They were, nonetheless, frustrated with behaviors and other situations. Two of the moms talked about their sons' tantrums. Now that their children were getting older, and heavier (50-60 pounds) it was getting a lot harder to contain the kids during public meltdowns. They were discussing that slowly and surely they were figuring out the triggers of their sons meltdowns. However, some things just seem unavoidable. What do you do when they run out of chicken nuggets at McDonalds and your kid is a flailing mass on the ground with 25 people all staring at you with looks of horror and disgust on their faces? Injuries sustained by these mothers are pretty scary - bites, scratches, bruises.
These moms were encouraging me that Zach will one day speak, and that their sons were a lot like Zach when they were 3 and not producing a lot of language. They recalled the "aha" moment when their kids developed language functionally. It was wild to hear how the kids went from non-verbal to speaking in grammatically correct appropriate sentences within a year's span. This of course gave me hope. At some point, however, I noticed a mother sitting quietly in the group. I sat next to her and asked her about her son. She was a single mom - and her son was still non-verbal even at 4 1/2. She probably was wincing at the mother's encouragement that Zach will be like their sons. Yes, there is a spectrum.
Steve doesn't have as much experience as I do hearing the stories from other parents. This certainly is very eye-opening for him. At least we are lucky enough to see the battles we are likely face in the future - many of these parents had no idea if what they were dealing with was common place or not.
Are these stories our future? Much like the Syracuse weather, it's almost impossible to forecast - but we know there will be snow.
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