This weekend we had a family wedding. It was at a vineyard in Skaneateles NY - possibly one of the most beautiful towns in the country. We had a great time at the wedding and were able to use Babcia Morphet as babysitter, so things were all good.
I just don't know about this karma stuff. We have a really nice evening and then I wake up to pain that reminds me of being in labor - except for this time it is in my mouth. I am pretty sure a root canal is in my near future. It seems like everything in life comes at a price for us.
I was basically nonfunctional because of the pain. And then I opened the letter from the school district. I always seem to get kicked when I am down. The school district has rescinded the services it initially agreed to for Sophia.
So I had the root canal yesterday afternoon - yawza. Throb, throb, throb. A meeting is scheduled for 10:30 today with the assistant director of special ed. A call has been placed to a lawyer but I will likely not have confered with him before the appointment. I feel weary. All because of the decay... my teeth, the system.
At least I'll probably lose a few pounds out of the deal.
Monday, September 14, 2009
Friday, September 11, 2009
My Sensory Child
I decided to post a bit about a facet of autism some of my "learning about autism" readers might not know about, sensory processing disorder (SPD) (sometimes also referred to as sensory integration disorder, or sensory processing dysfunction). SPD is not currently a recognized diagnosis in the DSM-IV. The DSM-IV is the American Psychiatric Association's Diagnostic and Statistical Manual, currently in its 4th edition and is the most recognized manual of diagnosis and criteria. There are many groups trying to get SPD as a specific entry into the DSM-V which is scheduled to come out 2012.
Studies by the SPD Foundation suggest that more than three-quarters of children with autistic spectrum disorders have significant symptoms of Sensory Processing Disorder.
A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. From the SPD Foundation website.
Now for the ironic part of our story. Zach has autism, and has some sensory issues. He likes to jump and walks on his toes, and has some self stimulatory behavior. These are part of the SPD. However, SPD effects our family more from Sophia.
So what are the signs in Sophia? She is like a walking definition of SPD Sophia :
- is a picky eater,
- likes her milk still warmed up,
- crashes all the time jumping into furniture,
- appears clumsy,
- hugs people all the time,
- has a great difficulty with certain loud sounds and certain frequencies (which is great when Zach starts his screeching),
- she cannot write very well, or color with crayons,
- she is very 'active' and doesn't sit still for very long,
- she is uncomfortable in a lot of clothing and complains about tags or scratchiness,
- extremely sensitive sense of smell,
- has difficulty getting herself dressed and undresssed,
- just started brushing her teeth herself but I still have to help,
- she is easily overwhelmed, (being outside is so much stimulus she goes off into another world sometimes)
- doesn't recognize when someone is not interested in what she wants to do,(has difficulty picking up on social cues)
- very easy to distract,
- has a hard time staying focused and completing her tasks,
- has no sense of personal space,
- complains of failure, refers to herself as a loser.
Now I am sure several of you out there are saying, I have a few of those symptoms. Almost all of us have a few of those symptoms, but likely most of us don't have all of those. Furthermore, these things inhibit Sophia and disrupt her ability to function normally and most importantly learn.
Mind you, I thought all of this was bullcocky initially. Sophia actually was evaluated for this prior to Zach's dx. It all came after a well visit to the pediatrician where I mentioned a minor concern of her inability to draw. He mentioned having her evaluated and went on to say he thought they would likely provide her with some materials (like workbooks) to help her out. This is the same pediatrician that I had mentioned Sophie's challenging behavior to a year prior, told me some kids are just more active, and at the end of the appointment after witnessing the energy source also called Sophia referred me to read a book on spirited children that was indeed very helpful.
When the school district was notified about the request for evaluation, I thought to myself - wow, such major overkill and a waste of our taxpayers money. You can check out my old post of the event if you are interested. Anyhow, they did a full eval- speech, OT, PT, cognitive and social. She totally exhausted the speech therapists test (of course.) Then the school psychologist sat down with me to review the results. Clearly, the psychologist was intrigued in what was going on. I thought for sure she was going to tell me "here are some workbooks, now go away". But actually, she said Sophia was a very interesting case. She did extremely well on some of the tests, and quite poorly on the others. Overall, her scores didn't look too bad, but she felt the things Sophia scored so low on were interfering with Sophia's ability to learn, and although her cognitive testing showed little if any delays, her tests on social abilities were impaired. Sophie was a smart girl, but she could be doing much better if we addressed some of this other "stuff".
At the time, they didn't give me a label. It wasn't until the OT worked with her for a month or so that I was finally given more information.
We all grew up with these kids in our classes - perhaps we were these kids in classes. Why bother paying this disorder much attention? Well, in Sophia's case, she is bright enough that she has learned avoidance techniques that help to mask or hide her problems. However, a lot of these children are not as capable as Sophia and struggle much more. Many of these cases also have co-morbidity with other ailments such as autism, ADHD. Autism or not, there are many treatments for these children that are causing significant improvement in symptoms, and furthermore, progression in skills, particularly academic.
We know so much more now today than we did back when I was a kid. Ritalin was the drug of choice from the 70's through the 90's. Isn't it great that there are non-pharmaceutical treatments available that are just as helpful if not more so?
What is Sophia's treatments? Currently she does sound therapy and brushing therapy. She also gets lots of individualized attention when it comes to riding her bike and writing her name. We also encourage her to jump on the trampoline and give her family members as many hugs as she needs (deep pressure gives her an intense feeling of calm.) What progress has she made? Sophia can now have her hair washed and not scream, she was able to watch fireworks for the first time (albeit from within a car with the windows rolled up a half mile out from the actual show) and has begun to do such self care actions such as brush her teeth and get herself undressed and dressed 75%. This is huge - although she has a lot more to do in order to be totally independent in these ways.
As for learning, after viewing the curriculum for kindergarten, she will likely have no problems academically in school becuase she has mostly covered everything. This half day business just doesn't hack it - any kid who went to preschool likely knows three quarters of what they will cover. *sigh* Knowing how challenging school will be for her when she gets older makes me wish we could challenge her more now. Guess that will be up to me at home to do with her. Wish I had a little background in education, wish I had a little talent when it comes to this stuff. I'll take recommendations.... (hint, hint)
Very few people would likely understand this - but Sophia has issues of her own - has been labelled as having a disability by the school district. It might not render her as different as the autism does Zach, but I cannot forget that she needs specific treatment herself.
I sure do miss normal.
Tuesday, September 8, 2009
Everyday is a First
It arrived Tuesday. My daughter left me to be with a bunch of strangers. They tell me that these strangers are better equipped to teach her all that she will need to know to get a job and be a productive citizen. I figured I've only needed 2 years of psychotherapy to get over various issues repressed from the golden years of public education for myself, why not give it a try for her.
She played outside at the neighbors who had 4 boys waiting for the bus - one fellow newcomer, M, who would be entering kindergarten with Sophie, but not in her classroom. After visiting there, we decided to go down another house to visit our neighbor's daughter M. who would be starting public school for the first time - 3rd grade.
Sophia was so-o-o excited. When the bus turned the corner onto our street - she went flying down the road to our driveway shouting "the bus is coming! the bus is coming!".
She didn't have much to say about the first day of school. I think she was expecting more playtime and was very disappointed that there was no recess. School is a half day with only 2.5 hours. I originally was happy about that, but realize now she probably would have benefited more from a full day program. Day 2 of school - first "issue". Sophia told me school was fine, but in the car on the way home from taking Zach to orientation, she mentioned her first incident. A little boy and a friend came up to Sophia and took her blocks from her, while one little boy told her he was "really good at stealing". Sophia promptly went to the teacher and she handled the rest. While I am happy that Sophia had the fortitude to seek out help from an adult as opposed to being a helpless victim, I am trying to build skills into Sophia to take matters into her own hands. We've read a few books on bullying - although this was far from that, but there are some good tips in these books - especially for girls who might tend to shy away. Based on these books, I told Sophia to do the following:
1) Say "No" or "Stop" strongly and immediately.
2) Try and come up with a solution. "I'll play with this ### for a few minutes and then you can have it."
If that doesn't resolve it:
1) Tell the other person how it makes her feel. "Your making me
2) Tell the other person that what they are doing is wrong and has to stop.
3) Go get an adult involved. OK - actually what I told her to do is to tell the other kid to "take a hike" and go get her teacher.
Hopefully this process will get better refined as the years go by. Now if only I could learn to do these things myself. :)
Yesterday we had orientation at Zach's school. Whoa. Not sure if I am up for this. I am now realizing that this is really happening. Zach will no longer be getting the one-on-one he has been, which I am very concerned about. He will be going from 32 hours a week, to 23, to possibly less than 10. According to his evaluations, he requires more, and we will likely need to address this very soon so not to set precedent, and more importantly, so he doesn't have loss of skills.
But today - off he went cross town. No school bus. No joy of all the other parents waiting with their kids at the bus stop. More like a day care feeling. I spent half of last night crying.
Ihope this a sign of things to come, but we just got an email report, and he appears to be doing well:
Just wanted to let you know that Zachary is doing wonderfully! He is participating in centers right now, and really enjoying the activities in front of him. We're already starting to get a sense of the things that are reinforcing for him. Here's a quick video (with little quality, but gives you the point) of him coloring with Kristen. You can't see his eye contact very clearly in the picture, but it's very impressive! He had a little difficulty transitioning from the classroom to the gym this morning demonstrated by some clinginess, but once he found an activity that was enjoyable for him, he was good to go.I have now watched this video 12 times.
Upon picking Zach up, I spotted him sitting in a TA's lap, totally curled up into her. He saw me, and you would have thought I was a total stranger. Where I was at first relieved by this, I then felt sorrow. Did he not know who I was? Did he not care? The indifference was killing me.
His report was good - he did well, played hard, and adjusted fairly well to all of the various people in the classroom.
I don't know about Steve, but the best way to sum up this experience is that I don't feel relief, but I don't feel fear either. Now I am anxious to see if he can progress in this environment. Let's hope and pray so.
The last few days have been a days of firsts. Let's hope that we can continue to have many days of many firsts: first bus rides, first words, first experiences, first conflicts, first resolutions.
Saturday, September 5, 2009
One step at a time
Two days ago we had a playdate with another family that not only has a 5 year old daughter entering kindergarten this fall, but a 2 year old dxed with autism, and they were married on October 20, 2001 - the same date as Steve and I. A little freaky don't you think?
Last week was the week of playdates. Zach is definitely interested in other people. He starts off a little shy, and usually parallel plays near the "action". If kids start running around like they usually do around here, acting like a bunch of banshees, he'll usually start running around too. I guess you would say he is social - but he usually has trouble interjecting himself directly into the action.
I know I have been freaking out lately, more than usual even. I know I am flighty, forgetting things and acting sort of foggy. I feel like within the last 3 weeks, something was happening to Zach, physiologically, and it wasn't good.
When you first realize your child has autism, at least in my case, you turn into some sort of super-hero. You outperform your wildest expectations (in my case, I read around 20 technical and a few anecdotal) books on autism in about 3o days time while fighting the system to get Zach services and getting an official dx on top of taking care of my mother with cancer, my daughter with sensory processing disorder, going to work, and being house manager. For those of you who are runners, my pace was about a 5:20 and I am normally a 9:45 sort of gal, although lately I would be happy with a 12:00. I blew my wad - I overshot all I had and now I feel like I am in some sort of catch up, snails pace for learning new stuff and everything else I am supposed to do.
Zach is such a happy little guy - I try to relish this. He laughs a decent amount everyday, although I feel like I have very little to do with it. I am just grateful that he has happiness in is life. I guess, being the semi-type A I am, I think to the future, how he will get on a bus, and then I feel like things will get tough. Not only will his care and education be out of view for me, we will have to contend with other children. I know how I was teased for being tall and smart (anyone see anything weird in that???) - I cannot even imagine how he might be teased. Our lead ABA therapist contends that I am thinking with my 1970's hat on, and that now days, kids are more tolerant of all sorts of things, especially disabilities, due to inclusion classes and respecting differences campaigns. However, I know what some of the adults in this world are like, and unfortunately, they spawn children. Nasty, selfish models are passed down from generation to generation.
This week, we will attempt to request a one-on-one therapist for Zach in the afternoons. I am not sure why we didn't get this in the first place other than to say they had me with a bag over my head back in Feburary when they were telling me what to do. I have recently talked to other parents, and to some of our therapists, and they all seem to concur that a decent amount of one-on-one is standard, and as we have seen, still required for Zach.
Zach has managed to not do very well in his therapy sessions, not coming close to meeting any of his targets. However, the other day while running around outside, I saw him jumping, which he loves to do, and I started singing th e"I'm Jumping" song from Sesame Street". I continued to pull weeds and Zach continued to jump. Next thing you know, I realized he was singing the "I'm Jumping" song while jumping along our walkway. It was a terrific feeling and once again made me realize the merits in my theory that he picks up a lot more in videos than I probably realize. I think video can be a great resource when mixed around regular play adn learning opportunities. Because of Zach's lack of receptive language, the video model works well to reinforce language with video models of what the language means. Kids on the spectrum tend to learn differently than other kids, at least in building basic skills. A good portion of peopel believe that their children are visual learners. I think with a kid having trouble with language skills, it's becuase that's all they have.
In order to get a snapshot of what Zach is like, I have decided to try and profile some skills, abilities, and likes.
Things that Zach likes:
Last week was the week of playdates. Zach is definitely interested in other people. He starts off a little shy, and usually parallel plays near the "action". If kids start running around like they usually do around here, acting like a bunch of banshees, he'll usually start running around too. I guess you would say he is social - but he usually has trouble interjecting himself directly into the action.
I know I have been freaking out lately, more than usual even. I know I am flighty, forgetting things and acting sort of foggy. I feel like within the last 3 weeks, something was happening to Zach, physiologically, and it wasn't good.
When you first realize your child has autism, at least in my case, you turn into some sort of super-hero. You outperform your wildest expectations (in my case, I read around 20 technical and a few anecdotal) books on autism in about 3o days time while fighting the system to get Zach services and getting an official dx on top of taking care of my mother with cancer, my daughter with sensory processing disorder, going to work, and being house manager. For those of you who are runners, my pace was about a 5:20 and I am normally a 9:45 sort of gal, although lately I would be happy with a 12:00. I blew my wad - I overshot all I had and now I feel like I am in some sort of catch up, snails pace for learning new stuff and everything else I am supposed to do.
Zach is such a happy little guy - I try to relish this. He laughs a decent amount everyday, although I feel like I have very little to do with it. I am just grateful that he has happiness in is life. I guess, being the semi-type A I am, I think to the future, how he will get on a bus, and then I feel like things will get tough. Not only will his care and education be out of view for me, we will have to contend with other children. I know how I was teased for being tall and smart (anyone see anything weird in that???) - I cannot even imagine how he might be teased. Our lead ABA therapist contends that I am thinking with my 1970's hat on, and that now days, kids are more tolerant of all sorts of things, especially disabilities, due to inclusion classes and respecting differences campaigns. However, I know what some of the adults in this world are like, and unfortunately, they spawn children. Nasty, selfish models are passed down from generation to generation.
This week, we will attempt to request a one-on-one therapist for Zach in the afternoons. I am not sure why we didn't get this in the first place other than to say they had me with a bag over my head back in Feburary when they were telling me what to do. I have recently talked to other parents, and to some of our therapists, and they all seem to concur that a decent amount of one-on-one is standard, and as we have seen, still required for Zach.
Zach has managed to not do very well in his therapy sessions, not coming close to meeting any of his targets. However, the other day while running around outside, I saw him jumping, which he loves to do, and I started singing th e"I'm Jumping" song from Sesame Street". I continued to pull weeds and Zach continued to jump. Next thing you know, I realized he was singing the "I'm Jumping" song while jumping along our walkway. It was a terrific feeling and once again made me realize the merits in my theory that he picks up a lot more in videos than I probably realize. I think video can be a great resource when mixed around regular play adn learning opportunities. Because of Zach's lack of receptive language, the video model works well to reinforce language with video models of what the language means. Kids on the spectrum tend to learn differently than other kids, at least in building basic skills. A good portion of peopel believe that their children are visual learners. I think with a kid having trouble with language skills, it's becuase that's all they have.
In order to get a snapshot of what Zach is like, I have decided to try and profile some skills, abilities, and likes.
Things that Zach likes:
- watching TV/videos: Dora, Blues Clues, Super Why, Thomas, Winne the Pooh sing alongs
- perusing books: particularly small board books like "Goodnight Moon", Sandra Boynton books
- physical activities: jumping on the trampoline, the bed, or all around, will go on the push trike about a half mile, will okay T-ball with me for like 5 minutes, loves lake water and deep pools, toddler pools are tolerated
- coloring: Zach will scribble with markers, pens, but tends to want to eat the crayons, no actual things drawn, won't imitate what you draw (circle, straight line)
- music: loves to move back and forth to anything with a beat, will occasionally sing some single words to common nusery songs, will occasionally become fascinated on the piano and hit keys (not banging on the piano like some kids)
- outtings: he likes rides, mostly tolerates the zoo, has gone canoeing without tipping us, loves the beach, particularly the ocean
- toys/games: trains and cars are the best, but plays with Sophia's doll house and puzzles, appears to like novelty, computer games
- self help skills: will remove shirt over his head once you pull it up on his head, will sometimes remove socks, will gesture to pull up pants and put on shoes, but cannot do it, will sometimes use utensils, can drink out of a cup, can use a straw, is good about brushing teeth , tolerates the bath although I have to wash him, can climb in the car, but I have to put him in car seat and buckle
- language/communication: rarely points, has some words but tends to need prompting, although up, milk, no don't appear to require prompting, tends to grab me by the hand and want to bring me to what he wants, can repeat most of what we say if we ask him to, not echolalia, but echoic.
- eats:
- loves brocolli, cucumbers, bananas, apples, peaches, organic uncured hot dogs (beef, chicken and turkey) and chicken nuggets, bacon, peanut butter, popcorn, rice, GFCF pastawith spaghettis sauce or with margarine, GFCF pretzels, Tings, french fries, mashed potatoes, pistachios, cashews, rice milk, almond milk, hemp milk, apple juice, homemade waffles and pancakes
- will eat half the time: peas, corn, carrots, strawberries, watermelon, cantaloupe, pineapple, fish sticks, apple sauce, pecans, cranberry juice, black olives, fruit leather, raisins , salad with GFCF salad dressing, cranberry juice
- won't eat for me: meat - like grilled chicken, peices of beef, pork, etc. , beans - black beans, garbanzo, green, asparagus, squash, celery, beets, cabbage
Friday, September 4, 2009
Outta the blue - a pinpoint of light.
Can someone please tell me what is going on in Zach's head? After today, I would say likely not. Went to the doctor to discuss the fact that Zach is appearing to regress again and his issues with not sleeping well, the spasms/ticks, loss of skills. I just realized while writing this that I didn't address motor skills- he is not using his fork all the sudden. As part of this mind numbing experience, I mention to the doctor that I was interested about knowing when an MRI is warranted. Mind you, this is a kid who had an anomaly on his EEG, at least 2 of 3 doctor's reading the EEG thought so. Anyhow, he described some stuff and then asked me what I was thinking when I mentioned the MRI. I asked if there could be inflammation in the brain? He asked me if I was talking about encephalitis, I said perhaps. He said that if it was encephalitis there would be symptoms like low consciousness. He then went on to say, "You know ...things that are very serious." Are you kidding me? Is autism not serious? Oh... I see autism is not medical. It's all psychological. Please.
According to the Mayo Clinic (anyone else out there think that naming some serious health institution something that sounds like a condiment is funny?) symptoms of encephalitis may include:
* Confusion and hallucinations
* Personality changes
* Double vision
* Seizures
* Muscle weakness
* Loss of sensation or paralysis in certain areas
* Tremors
* Rash
* Vomitting
C'mon - I am not saying it is maybe typically what you see for the rest of the population - but could there be something to this? He didn't care to pursue it. Will just have to make the neurologist do it. *sigh*
I just cannot let this get me down. I have to stay within a degree of sanity for Zach's sake. At least we have had a few things that have helped to add a little hope. I'll share the following with you for your reading pleasure.
Taken from an exchange between me and Zach's therapist regarding his recent lack of progress...
Amazon.com would normally heed this call, but with finances being what they are, a trip to the library will have to do, plus maybe a used bookstore or something?
According to the Mayo Clinic (anyone else out there think that naming some serious health institution something that sounds like a condiment is funny?) symptoms of encephalitis may include:
* Confusion and hallucinations
* Personality changes
* Double vision
* Seizures
* Muscle weakness
* Loss of sensation or paralysis in certain areas
* Tremors
* Rash
* Vomitting
C'mon - I am not saying it is maybe typically what you see for the rest of the population - but could there be something to this? He didn't care to pursue it. Will just have to make the neurologist do it. *sigh*
I just cannot let this get me down. I have to stay within a degree of sanity for Zach's sake. At least we have had a few things that have helped to add a little hope. I'll share the following with you for your reading pleasure.
Taken from an exchange between me and Zach's therapist regarding his recent lack of progress...
He surprised the snot out of me this morning. He slept well last night and ate breakfast . Anyhow, he was singing to himself, which made me feel a little better, especially with all that he has NOT been doing lately. Well, as he is singing to himself running around my bedroom - I hear "bladda bladda bladda ... .Winnie the Pooh, Winnie the Pooh... blaggadaggablaggdagga bloo bloo bloo, Winnie the Pooh, Winnie the Pooh, iwwee iwweee iweee". It was like me trying to sing a Stevie Nicks song - I never could understand her, just sounded like she had marbles in her mouth.
It made me realize that I really need to inundate him with media right now - books, videos, music. The stubborn sh*t needs to comply, but he also needs to learn and I think he really picks up on things in this other way.
Amazon.com would normally heed this call, but with finances being what they are, a trip to the library will have to do, plus maybe a used bookstore or something?
Wednesday, September 2, 2009
Beauty
Today was the day that we took Sophia in for a round of blood tests. She asked if it was going to hurt. I said yes. She told me she was scared. I told her that we are tough chicks and we would get through this together. When that didn't work the bribe came out; I told her that we would have a special trip to McDonalds immediately afterward and sure enough that seemed to ease the fear. Nothing like the thought of a junk food high to get you through the tough times.
Then came the blood letting. The phlebotomists were very nice, three of them crowded in the room when they saw this most adorable little blue eye blondie who had to have 5 viles taken. They tried to take Sophia's mind off of it - and she was so good when they first stuck her. I was relieved and stopped sweating. But no, blood was trickling out, had to abort. Ahh geesh. Off to the other arm we go. Now my brave little soldier is not so happy and the tears come. At this point I am so grateful that she is in her father's strong arms to hold her, because mine would likely be shaking. They have to wiggle the needle around. They got their viles, and Sophie got both a Scooby Doo and a Diego band aid. Done.
So why the blood tests, right? 1) A cholesterol check because of her limited diet. 2) An allergy check because of her near-chronic problematic nasal congestion. 3) A measles titer to prove adequate antibodies. She needs one more measles shot to enter school, and the only way it is administered is as part of the MMR, since the measles vaccine is currently not being manufactured as a single dose. Why should I give her the unneeded mumps and rubella vaccinations just because it's cheaper for the pharmaceutical companies to put out? The titer could indicate she doesn't need the booster. If her antibodies are not significant to show resistance, then we will cross that bridge when it comes.
So I am sure I am getting a few eyerolls now. Let me start here - I am not anti-vaccine. Both my mother and my husband's father had polio and I know what that vaccine has done to all but eliminate that. Books that I have read about the issue are somewhat informative, but no one really knows. Anyone thinking that this has been settled has to keep in mind that a bunch of lawyers (the Office of Special Masters) made the much publicized recent decision, not scientists or doctors . I don't know about you, but I am not ready for a lawyer to tell me something about medical safety. I don't think I would let a lawyer advise me on how to make my bed. Before I making any further lawyer jokes, the thing to keep in mind is that although they have not proven that vaccines cause autism, they haven't shown they don't. My current take is that they are a contributing factor for some children. Some books to read if you are further interested on the subject:
There may be better books out there. These are the ones I am familiar with - and each has a different take on the issue. (Vaccines are safe, vaccines are evil, and some vaccines are safeif/when ....) I believe in a genetic predisposition that lends itself to autism. And part of this genetic condition may make a child vulnerable to having viruses injected into their system, or perhaps it's the preservatives, or whatnot. I am a huge proponent for conducting research on identifying populations that are at risk for adverse effects of vaccines. Remember, some children are harmed by vaccines - and I am not talking about autism! There would be no special commision(the Office of Special Masters) if there weren't any problems. Check out some of the cases at the website. Enough of that for now - because I surely could go on and on about this topic.
Back to Sophia - off to McDonalds we went. While there - I saw a big burly man, about 6'3", 275 pounds, but cute like a bear. He was there with his two children, a daughter who looked to be about 12 and a son about 10. It didn't take long, I knew within 5 seconds: the boy had autism. While I sipped my coffee watching Sophia play, I contemplated pointing this out to Steve. I decided to do it. After I directed Steve to the boy and Steve took a long contemplative look, I saw the sadness in Steve's eyes. There were almost tears. Almost. Prior to having a clue in life about autism let alone any disability, I would have guessed the little guy to have had maybe a mild cerebral palsey. Steve would not have realized at all. The hand flapping gesture was so like Zach's. I realized that Steve had not really seen the face of autism up front and personal like that besides our little guy and another little guy aged 2. Age 10 is certainly more striking. Steve has read a lot of academic descriptions, even seen a few kids on YouTube. But this was different.
And then it happened. This big burly teddy-bear of a father walked up to his son (who appeared likely nonverbal or extremely limited) , tousled his hair, and gave the most tender kiss to the top of his head. If ever there was a description of love, this was it. As the tears came down my cheeks, I realized why I was crying, it wasn't feeling sorry for myself. Instead, I was given the opporunity to witness perfect beauty for the first time in my life. I wondered how many people would have even been able to recognize it, I don't think I would have a year prior to today. The father told the kids it was time to go, and I watched them hop into his SUV and go. And it all happened in the Playland section of McDonalds in Syracuse NY.
Then came the blood letting. The phlebotomists were very nice, three of them crowded in the room when they saw this most adorable little blue eye blondie who had to have 5 viles taken. They tried to take Sophia's mind off of it - and she was so good when they first stuck her. I was relieved and stopped sweating. But no, blood was trickling out, had to abort. Ahh geesh. Off to the other arm we go. Now my brave little soldier is not so happy and the tears come. At this point I am so grateful that she is in her father's strong arms to hold her, because mine would likely be shaking. They have to wiggle the needle around. They got their viles, and Sophie got both a Scooby Doo and a Diego band aid. Done.
So why the blood tests, right? 1) A cholesterol check because of her limited diet. 2) An allergy check because of her near-chronic problematic nasal congestion. 3) A measles titer to prove adequate antibodies. She needs one more measles shot to enter school, and the only way it is administered is as part of the MMR, since the measles vaccine is currently not being manufactured as a single dose. Why should I give her the unneeded mumps and rubella vaccinations just because it's cheaper for the pharmaceutical companies to put out? The titer could indicate she doesn't need the booster. If her antibodies are not significant to show resistance, then we will cross that bridge when it comes.
So I am sure I am getting a few eyerolls now. Let me start here - I am not anti-vaccine. Both my mother and my husband's father had polio and I know what that vaccine has done to all but eliminate that. Books that I have read about the issue are somewhat informative, but no one really knows. Anyone thinking that this has been settled has to keep in mind that a bunch of lawyers (the Office of Special Masters) made the much publicized recent decision, not scientists or doctors . I don't know about you, but I am not ready for a lawyer to tell me something about medical safety. I don't think I would let a lawyer advise me on how to make my bed. Before I making any further lawyer jokes, the thing to keep in mind is that although they have not proven that vaccines cause autism, they haven't shown they don't. My current take is that they are a contributing factor for some children. Some books to read if you are further interested on the subject:
- Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure by Paul A. Offit MD
- Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy by David Kirby
- The Vaccine Book: Making the Right Decision for Your Child by Robert Sears MD
There may be better books out there. These are the ones I am familiar with - and each has a different take on the issue. (Vaccines are safe, vaccines are evil, and some vaccines are safeif/when ....) I believe in a genetic predisposition that lends itself to autism. And part of this genetic condition may make a child vulnerable to having viruses injected into their system, or perhaps it's the preservatives, or whatnot. I am a huge proponent for conducting research on identifying populations that are at risk for adverse effects of vaccines. Remember, some children are harmed by vaccines - and I am not talking about autism! There would be no special commision(the Office of Special Masters) if there weren't any problems. Check out some of the cases at the website. Enough of that for now - because I surely could go on and on about this topic.
Back to Sophia - off to McDonalds we went. While there - I saw a big burly man, about 6'3", 275 pounds, but cute like a bear. He was there with his two children, a daughter who looked to be about 12 and a son about 10. It didn't take long, I knew within 5 seconds: the boy had autism. While I sipped my coffee watching Sophia play, I contemplated pointing this out to Steve. I decided to do it. After I directed Steve to the boy and Steve took a long contemplative look, I saw the sadness in Steve's eyes. There were almost tears. Almost. Prior to having a clue in life about autism let alone any disability, I would have guessed the little guy to have had maybe a mild cerebral palsey. Steve would not have realized at all. The hand flapping gesture was so like Zach's. I realized that Steve had not really seen the face of autism up front and personal like that besides our little guy and another little guy aged 2. Age 10 is certainly more striking. Steve has read a lot of academic descriptions, even seen a few kids on YouTube. But this was different.
And then it happened. This big burly teddy-bear of a father walked up to his son (who appeared likely nonverbal or extremely limited) , tousled his hair, and gave the most tender kiss to the top of his head. If ever there was a description of love, this was it. As the tears came down my cheeks, I realized why I was crying, it wasn't feeling sorry for myself. Instead, I was given the opporunity to witness perfect beauty for the first time in my life. I wondered how many people would have even been able to recognize it, I don't think I would have a year prior to today. The father told the kids it was time to go, and I watched them hop into his SUV and go. And it all happened in the Playland section of McDonalds in Syracuse NY.
Tuesday, September 1, 2009
The Green Eyed Devil
Sophia's bus ride as part of her orientation was not as dramatic as it was for other parents sending their 5 year old off on the big yellow burly vehicle. I didn't want to cry; I had absolutely no urge. I wished Steve could have been there to see some of the lunacy and disorganization that just made me laugh, in all honesty. For instance, her bus was over 30 minutes late to pick her up.
Then they referred to some badge the kids would wear as if we would know what it was and no one had a clue - oh woops - they forgot to hand those out.
When asked what to tell the kids to do on their first day of school when they get off the bus, the answer was that there would be someone to individually greet them. The mother who asked the question attempted to further clarify - "Should I tell my son to look for someone or walk to the entrance?" No, the answer was, there would just would be someone miraculously there for each child. To understand the nature of this problem, consider this:a bunch of 5 year olds who are going to school for the first time, and they will be sitting amongst first through fifth graders throughout this on 20 various buses. I wanna know how many school districts have 60 teachers available to locate children and direct them to their classroom. I am rethinking my vote for the next school budget.
And my personal favorite was the bus driver's assistant: he told a story to the kids of a little girl who did not pay attention to hand signals of the driver and "she was killed" (nothing like adding a little fear of dying to the separation anxiety...)
But I am not worried. It will be confusing, and I have little advice to offer Sophia, but she will be fine. Sophia is a pretty tough and astute little girl. And they must know I'll kill 'em if anything bad happens to her, right?
I enjoyed the visit, and then back home we were. I walked in to seeing Zach eating lunch. He ran his morning session while I was gone and the second therapist was now here. I sat in on the second session. He did some things well, and some things not so well. The therapist was surprised at all he didn't do. Is it noncompliance? It almost seemed as if he knew he should know, but couldn't remember what to do. My heart broke. Something is going on, and I have a call placed in to the pediatrician and Strong hospital in Rochester NY to ask for help.
Yesterday afternoon, we had a playdate with dear friends D. and her children who are Sophia's and Zach's age. Zach was initially napping during the first half hour. I awoke him and he seemed to enjoy the kids and the craziness - once in awhile even stepping in to the action. He was smiling and even interacted with D. the mother a bit. But as I watched D's son and heard him speak, my heart just ached. It was the same ache I felt when I watched the boys on Sophia's bus ride this morning talk and laugh and mess around. I want this.
Then there was the call from another mother whose son is also dxed and is 6 months younger than Zach. They stepped right into ABA - likely because of the fight we put up with the county. There was no lapse in service. Because of their son's age, they will not have to make the leap into the school system yet. They get a substantial amount of help from their family. I don't believe they have any financial concerns - they live in the a lovely well decorated home with everything in its place and lots of amenities. Better Homes and Gardens, and we look like something out of a fraternity house they day after the great beer pong party snapshot on flicker.
This morning came the shock of how much private therapy may cost us - $780 a week. The therapists tried to warn me how expensive it is. I have this pit in my stomach. Not a good time to lose my job. From what we observed - the school will likely not give enough one-on-one to Zach based on what he is used to getting, and based on what the recommendations were for him. I feel like we are going to go broke for sure. It might have been less expensive to keep the home based program now that I think about it. I think of the summer home we could have had on the lake... OK snap out of it, never gonna happen.
A good therapist is worth her weight in gold, platinum even. I just have to make sure that we are getting our money's worth - that this program is really producing results. This could be another dead end road for us. We will just have to come up with goals and requirements, measurements, and look at results. Sound engineering practices, in all honesty. That means I have to take more responsibility and others need to support me in making sure I get this done.
Right now, I have already suffered from SAHM Syndrome. What is that you ask? Stay At Home Mother Syndrome is when everybody thinks you have all this free time and that you are filling up your time with impossible Martha Stewart projects, watching Oprah in the background. That means, since your time is so meaningless, that you are fielding phone calls from everyone to check their mail, bring people to doctor's appointments, stay around for plumbers to fix things, etc. Uhh, no.
When I actually said no to someone about such a said request at 8:15 in the morning, and the appointment was for 10:30 that same morning, I actually had to hear the, "well the person I lined up to do this has a job that they are going to have to take time off from" remark. Are you kidding me? Maybe I would still have a job if someone gave a damn about what we were going through and its impact on my career 6 months ago.
I am jealous. I am envious. I don't want to be. It's selfish. But I look around and see people with solvable problems complaining and meanwhile I feel like I am in a no win situation. God - I am truly awful. I know people have it worse than us. I know of children whose autism is a lot more debilitating. Adding perspective doesn't seem to help the green eyed monster lying within me. I am totally freaking out if you can' tell.
If I try to live in the moment, enjoy my child's smiles and try and evoke a giggle, I feel like I may be ruining his chances of developing more abilities. If I get caught up in researching all the latest and greatest, significantly significant, scientifically validated treatments, I become overwhelmed. If I try to concentrate on existing therapy, and follow through in the home, I experience the joys, even thrills, of new and emerging skills, and saddened by the plateaus, and become disheartened, not quite bitter, at the regressions.
I know I am not in control. No one really is. But don't we all like to feel that we have some control? Some choices or actions that affect our destiny and the destiny of others, most importantly our children? Don't we want those choices to be the ones that drive us to where we want to be?
Maybe I just want to feel like I am contributing. I used to get a sense of that by doing volunteer or community work, my career, communing at my church, spending time with my extended family. Now, I wonder if all that ever meant anything at all - no one seems to recognize what I was up to - could I have been totally self serving and not even realized it? I don't even know if that matters anymore. I could be the most altruistic person on earth, but based on my circumstances, the only contributions I can really make right now are to my own family - that's what happens when you are lost at sea looking for land, you can only worry about the crew, not the people on the island.
Deep breaths, deep breaths. I know. Gotta get back to running, I know.
I have had a few mommas with kids who are on the spectrum tell me it gets better. I am not sure what that means. In some of those circumstances I think they said that because their child did develop and in some cases flourish. But what about the kids who don't? Does it still get better because you get used to it?
There are still joys out there. I may be the worlds biggest mush - and Zach loves to be mushed over - very cuddly, wants me to be held a lot. So maybe we are the perfect match - mutually beneficial joy. I sure do love him. Wish I wasn't such a gosh darned control freak who wants to have some security in having a glimpse of his future.
Since I began this post, we have since had another playdate - 3 wonderful, animated and sweet young girls. Zach once again enjoyed the craziness of the other children. He even imitated the 20 month old in sound production. It was great to see. And the Mom is so great at tolerating my lunacy, and sharing with me her feelings about parenthood. K. is one of those Moms who loves her kids, does so much for them, and keeps her cool. I don't think she has a jealous bone in her body. You know those moms who compare their kids, get a sense of pride out of early milestones? As if they really had anything to do with why little Tommy is walking at 8 months. Yeah - well I am not one of those and either is K. She accepts her children as is, and makes me feel at ease about Zach. Perhaps it's her special ed background.
I know my situation is different, more unsure and involving so much more complexity. But I feel if I really want to benefit my kids, I just gotta get a handle on my neurosis.
Zach is off with Babcia M. now taking a walk, Sophia is napping, and it is a beautiful 72 degree, blue sky day in Syracuse. Breathe, deep breaths.
Gotta run - Sophia woke up and is having a melt down that I cannot get a purple hair tie around her miniature moose to look like a belt. What a joy to have weird kids.
Then they referred to some badge the kids would wear as if we would know what it was and no one had a clue - oh woops - they forgot to hand those out.
When asked what to tell the kids to do on their first day of school when they get off the bus, the answer was that there would be someone to individually greet them. The mother who asked the question attempted to further clarify - "Should I tell my son to look for someone or walk to the entrance?" No, the answer was, there would just would be someone miraculously there for each child. To understand the nature of this problem, consider this:a bunch of 5 year olds who are going to school for the first time, and they will be sitting amongst first through fifth graders throughout this on 20 various buses. I wanna know how many school districts have 60 teachers available to locate children and direct them to their classroom. I am rethinking my vote for the next school budget.
And my personal favorite was the bus driver's assistant: he told a story to the kids of a little girl who did not pay attention to hand signals of the driver and "she was killed" (nothing like adding a little fear of dying to the separation anxiety...)
But I am not worried. It will be confusing, and I have little advice to offer Sophia, but she will be fine. Sophia is a pretty tough and astute little girl. And they must know I'll kill 'em if anything bad happens to her, right?
I enjoyed the visit, and then back home we were. I walked in to seeing Zach eating lunch. He ran his morning session while I was gone and the second therapist was now here. I sat in on the second session. He did some things well, and some things not so well. The therapist was surprised at all he didn't do. Is it noncompliance? It almost seemed as if he knew he should know, but couldn't remember what to do. My heart broke. Something is going on, and I have a call placed in to the pediatrician and Strong hospital in Rochester NY to ask for help.
Yesterday afternoon, we had a playdate with dear friends D. and her children who are Sophia's and Zach's age. Zach was initially napping during the first half hour. I awoke him and he seemed to enjoy the kids and the craziness - once in awhile even stepping in to the action. He was smiling and even interacted with D. the mother a bit. But as I watched D's son and heard him speak, my heart just ached. It was the same ache I felt when I watched the boys on Sophia's bus ride this morning talk and laugh and mess around. I want this.
Then there was the call from another mother whose son is also dxed and is 6 months younger than Zach. They stepped right into ABA - likely because of the fight we put up with the county. There was no lapse in service. Because of their son's age, they will not have to make the leap into the school system yet. They get a substantial amount of help from their family. I don't believe they have any financial concerns - they live in the a lovely well decorated home with everything in its place and lots of amenities. Better Homes and Gardens, and we look like something out of a fraternity house they day after the great beer pong party snapshot on flicker.
This morning came the shock of how much private therapy may cost us - $780 a week. The therapists tried to warn me how expensive it is. I have this pit in my stomach. Not a good time to lose my job. From what we observed - the school will likely not give enough one-on-one to Zach based on what he is used to getting, and based on what the recommendations were for him. I feel like we are going to go broke for sure. It might have been less expensive to keep the home based program now that I think about it. I think of the summer home we could have had on the lake... OK snap out of it, never gonna happen.
A good therapist is worth her weight in gold, platinum even. I just have to make sure that we are getting our money's worth - that this program is really producing results. This could be another dead end road for us. We will just have to come up with goals and requirements, measurements, and look at results. Sound engineering practices, in all honesty. That means I have to take more responsibility and others need to support me in making sure I get this done.
Right now, I have already suffered from SAHM Syndrome. What is that you ask? Stay At Home Mother Syndrome is when everybody thinks you have all this free time and that you are filling up your time with impossible Martha Stewart projects, watching Oprah in the background. That means, since your time is so meaningless, that you are fielding phone calls from everyone to check their mail, bring people to doctor's appointments, stay around for plumbers to fix things, etc. Uhh, no.
When I actually said no to someone about such a said request at 8:15 in the morning, and the appointment was for 10:30 that same morning, I actually had to hear the, "well the person I lined up to do this has a job that they are going to have to take time off from" remark. Are you kidding me? Maybe I would still have a job if someone gave a damn about what we were going through and its impact on my career 6 months ago.
I am jealous. I am envious. I don't want to be. It's selfish. But I look around and see people with solvable problems complaining and meanwhile I feel like I am in a no win situation. God - I am truly awful. I know people have it worse than us. I know of children whose autism is a lot more debilitating. Adding perspective doesn't seem to help the green eyed monster lying within me. I am totally freaking out if you can' tell.
If I try to live in the moment, enjoy my child's smiles and try and evoke a giggle, I feel like I may be ruining his chances of developing more abilities. If I get caught up in researching all the latest and greatest, significantly significant, scientifically validated treatments, I become overwhelmed. If I try to concentrate on existing therapy, and follow through in the home, I experience the joys, even thrills, of new and emerging skills, and saddened by the plateaus, and become disheartened, not quite bitter, at the regressions.
I know I am not in control. No one really is. But don't we all like to feel that we have some control? Some choices or actions that affect our destiny and the destiny of others, most importantly our children? Don't we want those choices to be the ones that drive us to where we want to be?
Maybe I just want to feel like I am contributing. I used to get a sense of that by doing volunteer or community work, my career, communing at my church, spending time with my extended family. Now, I wonder if all that ever meant anything at all - no one seems to recognize what I was up to - could I have been totally self serving and not even realized it? I don't even know if that matters anymore. I could be the most altruistic person on earth, but based on my circumstances, the only contributions I can really make right now are to my own family - that's what happens when you are lost at sea looking for land, you can only worry about the crew, not the people on the island.
Deep breaths, deep breaths. I know. Gotta get back to running, I know.
I have had a few mommas with kids who are on the spectrum tell me it gets better. I am not sure what that means. In some of those circumstances I think they said that because their child did develop and in some cases flourish. But what about the kids who don't? Does it still get better because you get used to it?
There are still joys out there. I may be the worlds biggest mush - and Zach loves to be mushed over - very cuddly, wants me to be held a lot. So maybe we are the perfect match - mutually beneficial joy. I sure do love him. Wish I wasn't such a gosh darned control freak who wants to have some security in having a glimpse of his future.
Since I began this post, we have since had another playdate - 3 wonderful, animated and sweet young girls. Zach once again enjoyed the craziness of the other children. He even imitated the 20 month old in sound production. It was great to see. And the Mom is so great at tolerating my lunacy, and sharing with me her feelings about parenthood. K. is one of those Moms who loves her kids, does so much for them, and keeps her cool. I don't think she has a jealous bone in her body. You know those moms who compare their kids, get a sense of pride out of early milestones? As if they really had anything to do with why little Tommy is walking at 8 months. Yeah - well I am not one of those and either is K. She accepts her children as is, and makes me feel at ease about Zach. Perhaps it's her special ed background.
I know my situation is different, more unsure and involving so much more complexity. But I feel if I really want to benefit my kids, I just gotta get a handle on my neurosis.
Zach is off with Babcia M. now taking a walk, Sophia is napping, and it is a beautiful 72 degree, blue sky day in Syracuse. Breathe, deep breaths.
Gotta run - Sophia woke up and is having a melt down that I cannot get a purple hair tie around her miniature moose to look like a belt. What a joy to have weird kids.
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