Gotta love Handel. Don't have to love the fact that Steve and I walk around sleep deprived.
Sleep issues and Zach. Yeah, we got 'em. And so do many parents - but at 4 years old, I guess I thought we would be passed this. Sleep disorders/issues seem to come with the territory if you have a child with autism. 44%-83% of kids on the spectrum have some sleep issue. (Sleep problems in autism: prevalence, cause, and intervention; Richdale, Amanda).
One comment I uttered a few years ago sticks in my head and seems to pop in and out at various times. When you first start to realize your kids are growing, you get so sad. A cousin of Steve's and her beautiful baby girl just posted on facebook a comment about putting away one size of clothes and going into the next and how the tears were a'flowing. I always hated the passing of time and my kids. I can recall saying to a friend that I just wished they could stay innocent forever. And wham. I guess God did grant me my wish. I feel like I have a perpetual infant sometimes with Zach. While he has progressed, I feel like he will be forever innocent, forever an infant. There are part about this that are nice, and parts that, well, make me wonder how we will handle the rest of our lives.
I feel like I will never have adequate sleep again. At this point, we are looking into getting a pediatric endocrinologist involved at the recommendation of Yale. Zach's sleep patterns are unusual, he has never required a lot of sleep. But more unusual is his night-waking. I have read a lot of kids on the spectrum night-wake - so does Zach, but rather than play around he tosses and turns. He actually appears to want to sleep, but isn't able to. This in conjunction with his GI issues may have a common link.
Some people have recommended benadryl and others melatonin. We are trying to avoid both of these options right now: 1) benadryl can work just great, except for those kids who react as if they were on speed to it, and 2) melatonin slows down the digestive system, and Zach already has slow digestive motility and I have gotten used to not having him barf and really don't feel like going there right now.
The odd part about this is that once in awhile, Zach throws us a bone and sleeps through the night. The next day, we all feel amazing - vibrant, clear thinking, alert, happy. But I have learned not to get used to this feeling. It won't be there for long.
So there you have it, just another reason why you should be grateful if your child doesn't have a disability. Sleep.
So if Steve and I look like we have been up all night - we likely have been. Or recovering from some sort of interrupted sleep.
Coffee anyone??
Wednesday, October 27, 2010
Tuesday, October 26, 2010
Freak
In the 4th grade is when it started. I was about a foot taller than everybody. If I wore green I was called "The Green Giant", yellow - "Big Bird" - white "stork", you get the picture. Comments about my height were rather benign by many standards, but these comments that I physically did not fit in ended up putting me in a terrible place when adolescence hit. I was flat chested and taller then every boy around, not prime dating material. These apparently innocuous comments went on to make me incredibly vulnerable. A 5'10" thin blue eyed blonde made to feel self conscious. Sounds strange, but is very true. I couldn't believe anyone would ever find me attractive. I am a married 40 year old woman with 2 children, and these thoughts still linger in my mind.
Then there were the comments that came around 5th grade - kids start to realize you are getting 100's on all the quizzes, I played violin and sang in the choir, I answered the questions with interest and feeling at religious studies, I didn't have a lot of friends, teachers favored me. I was, by all descriptions, a geek. I remember being called "the great brain" and well, even though it sounds all great, it wasn't meant as a compliment, and made me feel so self conscious for wanting to succeed and being interested in academics. It was cool to act like you didn't care. But here lies the problem - I did with all my heart. I am still that person. I care with all my heart about so many things. I constantly over involve myself in other people's problems - hoping I can make a difference. And for this, I was mocked, and worse off as time has gone on, been taken great advantage of. It is by far the most daunting characteristic I have had to live with.
We all face scars from our childhood - have been teased, maybe even bullied. Children are cruel. And as much as I think they are immature and are not developmentally able to empathize yet- I see far too many people accepting these things than correcting them. Most kids go on to understand that these sort of things aren't right, but because they eventually learn their lesson isn't the point, these comments still do damage. The damage must be reckoned with too.
It's in the news everywhere - bullying, suicide rates for gay teens, suicides of young girls from social network intimidation, etc. We have made it even easier for people to show the nastiest, most vile sides of their selves through the anonymity of the Internet. Are we callousing ourselves to rude behavior since it seems to have escalated to such levels?
As a parent of a child with a disability, I am even more afraid of what will happen to my son. I would go as far as saying it terrifies me. Steve told me once that he wished Zach's disability was physical in nature, because at least then when the fools say something nasty to him, he can tell them to "f*ck off".
I would like to think that children are more aware of special needs more than ever - that their parents are raising them to be kind and generous with more knowledge due to awareness campaigns. But you know what - the dipwads who were having kids when my parents were, have spawned and multiplied their ignorance genes. I NEVER, even in my ignorant stages of life (when I thought that those things happen to those people) would have ever told someone with a disability, or back in my day "was just sort of weird" that I thought that they were "sort of weird". I was not raised that way. In fact, I was more apt to want to bop someone in the nose if I saw them doing that.
A note from a FEAT friend today:
Just wanted to let everyone know that Tyler went to a "typical" friend's birthday party yesterday at the American Legion. He was so excited to be invited. When we went in, he saw some "old" friends immediately and went to play with them. After less than 5 minutes, I saw him standing alone against the wall. Find out, the kids told him that he was "weirder than he was before" and they didn't want to play with him. So I helped him find another friend there. Again after less than 5 minutes, I found him crying in the bathroom. The kids called him a freak because he talked about Pokemon so much. They didn't want to play with him either. Then during musical chairs, he screamed because of the noise and lights. Again, was called a "freak" AND no parent disciplined their child either. I took his hand and immediately went into the bathroom where I hid in the stall and cried. I did NOT want him to see me cry but it hurt to see my little guy get treated in such a way.....and I thought he was doing so good too. Anyways, after I got out of the stall, he said to me "Momma, I want to go home. This party is not fun for me anymore".......we left. On the way home, he said to me, "Momma, am I a freak?" I said NO. He said "I'm glad that my Autism friends don't call me names like that. They are good friends, Momma.".....I just wanted to share that with you guys. Needless to say, I haven't been too "happy" yesterday or today. I can't get it out of my mind. Thanks all you "Feat Families" for loving my boy just the way he is!!! :)This mother went on to belittle herself for leaving the party without defending her son, just adding to her pain. I would likely have been so flabbergasted myself, I would have done the same. Acting so rudely is so contrary to who I am and how I was raised, it just doesn't come natural for me to belittle someone, even when they darn well deserve it.
"all my "comebacks" come back hours later. :( Kinda loses the meaning of "comeback", eh?"I tried, as did a few others, to console her with comments. I felt helpless to do anything meaningful though, like my comments were ether. I am hoping that this post may enlighten just one person to realize that bad behavior is never acceptable, even with children. They may not outgrow it if they never are told it is wrong.
So here is the funny part of the story. Even in my parent support group, I feel like an outsider. I kind of feel like I float around the group, watching them, trying to intersect into their space. This is when I wonder if I have all along had some sort of social disorder - because even amongst "misfits" I don't fit. I talk too much at times, and am completely quiet at others, I don't say the right things. The kicker is that one of the mother's in our little group is on the spectrum herself, and even she does better socially than I do. I hope the people in my life recognize that I might not be the best in social situations, but I am trying and I do care. Too much probably.
The story above is just one story amongst many. Parents' hearts break everyday when their special needs children are mocked and the general public likely shrug it off. Wish their was an answer. Will the meek really inherit the Earth or do I need to take lessons in a little whoop-*ss talk so I can make sure to have my game on for when this happens to us?
Thursday, October 21, 2010
Insurance Legislation : the NY VETO
This is post is a snoozer if you ask me, this could probably be more aptly named: Everything and Nothing You Ever Wanted to Know About Autism Insurance Reform in New York State
The governor of the state of New York has vetoed a bill for autism insurance reform. You may have noticed that I have not been talking much about this lately. Good reason for that too.
A little background: currently 23 states have laws on the books mandating some sort of insurance coverage for kids on the spectrum. 13 states (including NY) have legislation pending - bills introduced and endorsed, and another 9 states that have bills awaiting introduction into their respective legislatures. That leaves 5 states with nothing going on at all.
The New York bill had unanimously passed both the State Senate and Assembly. Governor Paterson vetoed the bill at the last final moment he could legally do so, the evening of day 10, that it reached his desk.
People affected by autism were split on this legislation. There were many who were happy the governor rejected it. There were forces out there that stated that Governor Paterson had heard their calls to veto it and were happy with his decision. However, his declared decision had nothing to do with these parents wishes for the bill to be rejected; he vetoed the bill for fiscal reasons alone according to the veto documentation. In his veto justification, he estimates the state and municipal cost at $70 million annually. Autism Speaks refutes this estimate as being "inaccurate costs projections" and cite $0 dollars first year, and the subsequent year at $30 million with insurance premium increases of 0.65%.
So why did these parents want this bill rejected? One thing objectors state is that it would give insurers the ability to reject claims once accepted. According to critics, the criteria of treatments to be "evidence-based, peer-reviewed and clinically proven” is above and beyond standards for any other medical treatments. Some state that there isn't a single treatment that could pass these constraints. However, families would have been able to appeal denials to an independent review panel if an initial grievance to the insurer was unsuccessful.
Another issue: governmental oversight. There would be a four-agency committee to decide what treatment may be covered. As pointed out by the objectors - no other medical condition requires this.
And what is my particular take on all of this? I was leery the moment this particular bill was introduced. I had been following insurance legislation, since we got into this whole mess in the first place, 23 months ago. There were several bills that were introduced, and one bill that seemed more comprehensive than the others.
All of a sudden, out of what felt like no where, a new bill, S7000, arrived and consequently was passed within 3 months of introduction. My hackles were raised at how this all proceeded - and I felt it could only be one thing: a behind the doors deal. I kept my suspicions to myself. Remember: I know I have the reasoning of a 77 year old man and realize my skepticism may not always be accurate. I want to believe in good things.
But then I read the bill. It was vague and without constraints - no caps? no age limits? Seemed incredibly open-ended.
As I kept mum about this, since I felt so ignorant about it, I kept my ear to the ground. And what I have heard seemed to confirm my skepticism. Rumor #1: The legislation was drafted by an insurance lobbyist. Rumor #2: The legislation was introduced in a session where no non-legislative attendees were present with the exception of the drafters of the bill - said insurance lobbyists.
Certain groups that have an official capacity in these things endorsed the bill - such as NYSABA (New York State Association of Behavior Analysts), AAP (American Academy of Pediatrics) and even the New York State Catholic Conference. But they are likely unaware of all the legal/political underpinnings and suspicious activities around this bill.
Honestly, I am unsure of how I feel about this bill. Part of me, just wants to see anything get through, and once we get our foot in the door, we can just try to pry it open further. But the other part of me is feeling like someone has poisoned the watering hole; this legislation could be outright dangerous and avoid covering anyone while making the general populous think that there is coverage and children are having their needs met. uugghhh
The inequity in treatment drives me nuts. I have heard that if we lived in Connecticut or Massachusetts, that most of the therapy would have been paid for by the school district according to a few of the therapists we have used that are from those areas. I have heard that if we lived downstate - in the New York city area, that we would be getting 40 hours no problem. I know parents in the local area who received services, 40 hours, etc. from their school districts, although not many. I know of a family who moved to Wisconsin and will be getting 35 hours of services for their child. Are we supposed to move in order for Zach to get services paid for? Don't think we are not thinking about this.
This is what I know:
1) my son needs services,
2) the services he has received have made a difference for him; his early intervention has likely helped to create a better outcome for him, as limited as it has been.
3) he needs more services than we can afford for him.
4) every dollar spent now likely will save much more later.
This is also what I know:
1) Insurance companies
2) Lobbyists
3) Backdoor policymakers
scare the snot out of me .... OK not really, but they don't have my son's best interest at heart.
It's up for me and Steve to finagle a way to make things work for Zach - and it is important for me to point out to all of you who are not going through this that gross inequities exist for families who need services for their child. You are not given anything automatically and what might look good on paper might stink in reality anyhow.
The governor of the state of New York has vetoed a bill for autism insurance reform. You may have noticed that I have not been talking much about this lately. Good reason for that too.
A little background: currently 23 states have laws on the books mandating some sort of insurance coverage for kids on the spectrum. 13 states (including NY) have legislation pending - bills introduced and endorsed, and another 9 states that have bills awaiting introduction into their respective legislatures. That leaves 5 states with nothing going on at all.
The New York bill had unanimously passed both the State Senate and Assembly. Governor Paterson vetoed the bill at the last final moment he could legally do so, the evening of day 10, that it reached his desk.
People affected by autism were split on this legislation. There were many who were happy the governor rejected it. There were forces out there that stated that Governor Paterson had heard their calls to veto it and were happy with his decision. However, his declared decision had nothing to do with these parents wishes for the bill to be rejected; he vetoed the bill for fiscal reasons alone according to the veto documentation. In his veto justification, he estimates the state and municipal cost at $70 million annually. Autism Speaks refutes this estimate as being "inaccurate costs projections" and cite $0 dollars first year, and the subsequent year at $30 million with insurance premium increases of 0.65%.
Supporters say it would allow for coverage of diagnosis and evaluation, plus evidence based approaches like behavioral therapy. Our out of pocket costs for behavioral therapy for this year will be approximately $18,000 and his evaluation at Yale was $5,500. These costs do not include his dietary intervention costs and supplements, integrative pediatrician visits, copays, the basement finishing we are doing so he can have more effective space for PT and OT, nor the specific toys and materials that we purchase to support his therapy, books and other reference materials. I cannot even remember what last year cost us, but it was similar. As we like to call Zach around here: our little kitchen remodel.
So why did these parents want this bill rejected? One thing objectors state is that it would give insurers the ability to reject claims once accepted. According to critics, the criteria of treatments to be "evidence-based, peer-reviewed and clinically proven” is above and beyond standards for any other medical treatments. Some state that there isn't a single treatment that could pass these constraints. However, families would have been able to appeal denials to an independent review panel if an initial grievance to the insurer was unsuccessful.
Another issue: governmental oversight. There would be a four-agency committee to decide what treatment may be covered. As pointed out by the objectors - no other medical condition requires this.
And what is my particular take on all of this? I was leery the moment this particular bill was introduced. I had been following insurance legislation, since we got into this whole mess in the first place, 23 months ago. There were several bills that were introduced, and one bill that seemed more comprehensive than the others.
All of a sudden, out of what felt like no where, a new bill, S7000, arrived and consequently was passed within 3 months of introduction. My hackles were raised at how this all proceeded - and I felt it could only be one thing: a behind the doors deal. I kept my suspicions to myself. Remember: I know I have the reasoning of a 77 year old man and realize my skepticism may not always be accurate. I want to believe in good things.
But then I read the bill. It was vague and without constraints - no caps? no age limits? Seemed incredibly open-ended.
As I kept mum about this, since I felt so ignorant about it, I kept my ear to the ground. And what I have heard seemed to confirm my skepticism. Rumor #1: The legislation was drafted by an insurance lobbyist. Rumor #2: The legislation was introduced in a session where no non-legislative attendees were present with the exception of the drafters of the bill - said insurance lobbyists.
Certain groups that have an official capacity in these things endorsed the bill - such as NYSABA (New York State Association of Behavior Analysts), AAP (American Academy of Pediatrics) and even the New York State Catholic Conference. But they are likely unaware of all the legal/political underpinnings and suspicious activities around this bill.
Honestly, I am unsure of how I feel about this bill. Part of me, just wants to see anything get through, and once we get our foot in the door, we can just try to pry it open further. But the other part of me is feeling like someone has poisoned the watering hole; this legislation could be outright dangerous and avoid covering anyone while making the general populous think that there is coverage and children are having their needs met. uugghhh
The inequity in treatment drives me nuts. I have heard that if we lived in Connecticut or Massachusetts, that most of the therapy would have been paid for by the school district according to a few of the therapists we have used that are from those areas. I have heard that if we lived downstate - in the New York city area, that we would be getting 40 hours no problem. I know parents in the local area who received services, 40 hours, etc. from their school districts, although not many. I know of a family who moved to Wisconsin and will be getting 35 hours of services for their child. Are we supposed to move in order for Zach to get services paid for? Don't think we are not thinking about this.
This is what I know:
1) my son needs services,
2) the services he has received have made a difference for him; his early intervention has likely helped to create a better outcome for him, as limited as it has been.
3) he needs more services than we can afford for him.
4) every dollar spent now likely will save much more later.
This is also what I know:
1) Insurance companies
2) Lobbyists
3) Backdoor policymakers
scare the snot out of me .... OK not really, but they don't have my son's best interest at heart.
It's up for me and Steve to finagle a way to make things work for Zach - and it is important for me to point out to all of you who are not going through this that gross inequities exist for families who need services for their child. You are not given anything automatically and what might look good on paper might stink in reality anyhow.
Tuesday, October 19, 2010
Birthday Shennanigans
October is a pretty high celebratory month in the Morphet house. Zach's birthday, Steve's birthday, and our anniversary all rolled into one month. This past weekend we celebrated Steve's birthday as we do all things around here, with overbooking, great physical feats, and complete chaos.
(Do you like Steve's corporate mug shot?)
As you may recall, we have begun our basement finishing project. We have completed the insulation phase of the project, and that's about it. Everything else is in some state of upheaval or another. We have hired a contractor to show us what to do. And so far Steve has done quite a bit - putting up insulation, studs, rerouting ductwork, and this past (don't forget his birthday) weekend, cutting into our concrete slab and jack-hammering the snot out of it, then a bunch of digging. Do I know how to throw him a party or what?
It reminds me of Steve's birthday eight years ago. I had things semi-planned, there would be a small surprise party, some food and cake. And whamo! our basement was flooded with sewage roughly 1 hour and 45 minutes before the guests arrived.
Me: "Uh honey?"
Steve: "Yeah?"
Me: "The basement ...well...."
Steve: " I'll get to it..."
Me: " Well the thing is, we have company coming in about 2 hours."
Steve: "What?"
Me: "Surprise!!! Happy Birthday"
Amidst the basement undertaking, this past weekend, I was able to book a few more fun things in: a trip to the local comedy club (free tickets from a local autism family support group) and our first wine tour through the Finger Lakes (a package through our church that was a present from Cathy and Mark).
This meant our children were under the direction of others for several hours this weekend. I am just not used to not seeing them all the time. I have to say - that I was glad to see them by the time we sloshed off the tour bus from the wine tasting.
Sophia had a Halloween Bash this weekend and her final soccer practice of the season. I am still in awe of the fact that we had 6 continuous Saturdays in a row of soccer practice with no rain. Sunday night rolled around and I needed a break from our weekend! Steve even made his own cupcakes. I am so embarrassed by this most of all!
Now on to our anniversary. 9 years ago, we were getting hitched and feeling the wind at our backs. A lot has changed in 9 years. I have been told to write a book. Our life is rich!
Happy birthday and ANNIVERSARY STEVEN!
Monday, October 18, 2010
In Memory
One year ago, a friend lost their 5 year old son to complications from H1N1. I cannot stop thinking of the sadness of this event. They have done a terrific job at trying to keep his spirit alive by building a park for him and doing advocacy work. I cannot begin to understand their pain, but I can imagine that it is beyond words.
If you have a child and he is troubling you with some thing or the other, please keep in mind that his life is precious, as all of ours are. Maybe be considerate to someone you might not deserve it today - they too could be experiencing some significant loss in their life and need a little compassion.
Peace.
If you have a child and he is troubling you with some thing or the other, please keep in mind that his life is precious, as all of ours are. Maybe be considerate to someone you might not deserve it today - they too could be experiencing some significant loss in their life and need a little compassion.
Peace.
Friday, October 15, 2010
Zach turned 4!!!
I cannot believe my beautiful boy turned 4 already! For Zach's birthday - we didn't eat cake, he opened only one present (with a lot of coaxing) and we went on a 5 and a half hour drive to stay with people we never met.
I am still not ready to post anything about Yale yet. Hey - their report won't be arriving for another 7 weeks anyhow so anything I would report would come from my fairly faulty memory.
But enough referencing that visit already. I want to write a post to celebrate my dear, beautiful son's life. I had the chance to report on some of Zach's latest developments in the last post. I thought it might be a good time to summarize where he is at right now and what we are up to regarding his treatment.
We are in a home program now, where he receives occupational therapy (OT), physical therapy (PT), and special education services. We currently have a five person team. We do not have an official SLP - but one of our home providers has an undergrad degree in speech and can handle a lot of that. This boy gets a workout I tell you! He likes his team, and I have seen a difference in his attending to things already.
Of the latest things that I have noticed about him, there are some things that are hard to describe in terms of a specific skill, yet I think are as significant: he has begun to interact with his sister in a more typical fashion, teasing her, getting mad at her when she teases him, and running around the house with her giggling at their interaction. I love it. The sound of their feet scurrying around the house, only to be proceeded by a fit of giggles is astonishingly the most beautiful sound I have ever heard. I only wish it happened more often. Then the other behavior of Zach's that caught me off guard because it was so, well, so typical of a child, was the other day when he didn't get his way, he did a fake cry to try to get his mush-of-a-mother to cave in. The way he squinted his eyes and made this crying sound made me laugh. I was shocked that he knew how to play me and could act. Who says my kid can't pretend?
Things Zach likes: potato chips, broccoli, cucumbers, hot dogs, chocolate, bananas, raspberries, Thomas the Train anything, his iPad, magnets, water, swimming, balls, obstacle courses, jumping, letters, cuddling, going on adventures, his family being together, drawers to be closed, a hand me down T-shirt with none other than Thomas characters on it. He is wearing the T-shirt in the picture to the right although you can't see it well in this picture. He would wear this t-shirt 24x7 if he could. He searches his closet daily for it, and we purposely hide it from him. We have given him other Thomas the Train apparel before, so why this is so compelling to him, like Zach himself, is a mystery to us.
Zach is still his smiley self that he has been since he was a few months old. His independence is emerging which is both exciting and scary. First bit of independence came when he began getting out of his bed. He used to wait for us to come in his room and get him in the morning. A lot of people think this is a good thing, but it is not typical. I was constantly concerned that if he were to get sick or some other issue were to arise, he wouldn't come and tell me. Part of the reason we have Sophia and him share a bedroom is for her to alert us to such events. About 2 months ago, he actually woke up and came downstairs into the kitchen where Steve was making breakfast. We were shocked! Now the problem has been a little night visitor coming into our room to hop into bed with us. z-z-z-z sorry I fell asleep.
The other thing he has started to do is open up the fridge and pantry and attempt to "self serve". I have to laugh that he is not clumsy - and we have had few spills associated with these events. He will climb, a definite skill of his, up cupboards and shelves to get at what he wants. Yup. So far he hasn't managed to grab any of the foods we would like him to avoid, so this is good. So far at least.
WARNING *** TOILET TRAINING TALK ********************************************
Potty training is going well. He is schedule trained - which means he is holding it until we put him on the potty. He has not begun to initiate which is our next hurdle. The original program we were operating under said to elongate the periods between putting him on the potty in which accident frequency would increase and requesting to go on the potty now that he is used to being dry should at some point commence. Well, first off, this kid has a bladder of iron - he held his pee for 10 hours!! So I am not quite sure what is going to be the next steps here. Right now, we are keeping the trips to the potty frequent so that he has many instances if practicing self help skills such as pulling his pants and underwear on and off and washing his hands.
**********************************************************************************
Zach and Sophia had a recent field trip with his aunt and uncle to an apple farm. As much as this was supposed to be a break for me and Steve to enjoy a Sunday morning/afternoon to ourselves, I instead spent it sweating. I was too scared to leave the house to run errands. He has not had a lot of opportunities to go out with people except for me and Steve. Would he tantrum? Would he wet himself? Would some new behavior come out? Anxiety and lots of it. Yup, that would be me.
In the end - he did great. In fact, I noticed later on that day that he had bonded with his Uncle Mark. Zach has always had an affinity to men over women.
I feel so blessed to have him in my life. Sophia changed my life forever, and Zach continued the change. I can say that I am a much better person because of my children. I like what I have learned about myself that I never knew, my patience, ability to communicate effectively, and perseverance. I also like how I have changed, increased my work ethic and ability to stay on task, tolerating others different than me, and going on to appreciate them and even love them regardless of these differences. Pretty profound stuff.
People often look away from those who are different than them, avoiding eye contact with someone so different than themselves, whether it be because of race, status, or disability. I find it funny to see the number of people who look at Zach - and smile. He has a smile that lights up a room. Who knows, maybe he will help to change people's attitudes about special needs, and what autism is. I know he did that for me.
Happy Birthday my beautiful boy!
Wednesday, October 13, 2010
The "Real" World: Butterflies, Ladybugs, Black Cats and Cake
Yes we went to Yale. Yes we made it home OK. The trip was informative, difficult, and affirmative all at the same time. Still processing and will post more about it when given the chance, so expect that sometime in 2015.
Want to do a quick post to talk about things Zach is up to. Prefer to write about these things anyhow and not yucky trips to institutions that use words like progress, standardized scores, and deviation.
Zach shocked the heck out of us at his birthday party this past weekend. On Saturday we had a very informal play-date/birthday party and he promptly ignored the other children with the exception of one child whom took his hat off and Zach later went up to him and put his hat back on him. Nothing substantial to report on Zach's behalf, but great friends who showed up without the promises of all the gimmicks of the great American birthday party - just an offer for unorganized play and cupcakes. You start to realize who your friends are at these events.
Then there was the family party the next day. He saw the cake Steve had purchased for him and went nuts for him. Being that we wanted to eat dinner first, and then have cake, we hid the cake out of sight and allowed Zach to open one present to divert his attention. At some point this tactic no longer worked, and while I was in the living room with the grandma's, much of the company watching the Giant's game in the family room, I heard Zach in the kitchen say to Steve, with gusto I might add, "I want a treat!". I ran into the kitchen and Steve told me that Zach totally spontaneously uttered this COMPLETE SENTENCE on his own, without prompting! We ran the cake into the dining room, rushed everyone in, cut the cake and gave Zach a piece, all while singing "Happy Birthday" without candles on the cake. I am not sure if my family understood 1) the necessity of giving the Zach the cake right away after his request (need to reinforce what he asked for so he will do it again) and 2) why this was such a big deal. Zach said his on his own and it was appropriate. Can you tell I am a little excited about this?
Then this past few days - Zach noticed and interacted with the three gazillion lady bugs outside our house, he chased a butterfly in our lawn, and he pursued and grabbed and petted our neighbors cat who was gracious with Zach's not-so-gentle touch. This cat has certainly endeared himself to me! Now, if you are thinking this sounds like no big deal and why would I possibly bore you with this - I want you to get down on your knees right now and thank the good Lord for not having a child who is unaware of the world around him. This, in Zach's case, has been part of his autism. This seemingly ambivalence to many things of living form is heart breaking to many a parent. It breaks your heart to have to share your child with a world you are in, and one you are not part of. I feel constant pulls between these two worlds, and for once in my life, I feel like I can say that Zach is more part of our world than his own. It might only be a 55%/45% split right now, but it is slowly edging up. I don't need for him to be 100% - in fact, I have learned to be in that other world myself, and am willing to meet him part way. But I still need him to be here just a bit more - to function enough so that he can understand the power of communication, and then have the ability to communicate his desire and needs so that they can be met. This is my goal for him right now - to more throughly understand who he is so I can help him to be all he wants to be.
Want to do a quick post to talk about things Zach is up to. Prefer to write about these things anyhow and not yucky trips to institutions that use words like progress, standardized scores, and deviation.
Zach shocked the heck out of us at his birthday party this past weekend. On Saturday we had a very informal play-date/birthday party and he promptly ignored the other children with the exception of one child whom took his hat off and Zach later went up to him and put his hat back on him. Nothing substantial to report on Zach's behalf, but great friends who showed up without the promises of all the gimmicks of the great American birthday party - just an offer for unorganized play and cupcakes. You start to realize who your friends are at these events.
Then there was the family party the next day. He saw the cake Steve had purchased for him and went nuts for him. Being that we wanted to eat dinner first, and then have cake, we hid the cake out of sight and allowed Zach to open one present to divert his attention. At some point this tactic no longer worked, and while I was in the living room with the grandma's, much of the company watching the Giant's game in the family room, I heard Zach in the kitchen say to Steve, with gusto I might add, "I want a treat!". I ran into the kitchen and Steve told me that Zach totally spontaneously uttered this COMPLETE SENTENCE on his own, without prompting! We ran the cake into the dining room, rushed everyone in, cut the cake and gave Zach a piece, all while singing "Happy Birthday" without candles on the cake. I am not sure if my family understood 1) the necessity of giving the Zach the cake right away after his request (need to reinforce what he asked for so he will do it again) and 2) why this was such a big deal. Zach said his on his own and it was appropriate. Can you tell I am a little excited about this?
Then this past few days - Zach noticed and interacted with the three gazillion lady bugs outside our house, he chased a butterfly in our lawn, and he pursued and grabbed and petted our neighbors cat who was gracious with Zach's not-so-gentle touch. This cat has certainly endeared himself to me! Now, if you are thinking this sounds like no big deal and why would I possibly bore you with this - I want you to get down on your knees right now and thank the good Lord for not having a child who is unaware of the world around him. This, in Zach's case, has been part of his autism. This seemingly ambivalence to many things of living form is heart breaking to many a parent. It breaks your heart to have to share your child with a world you are in, and one you are not part of. I feel constant pulls between these two worlds, and for once in my life, I feel like I can say that Zach is more part of our world than his own. It might only be a 55%/45% split right now, but it is slowly edging up. I don't need for him to be 100% - in fact, I have learned to be in that other world myself, and am willing to meet him part way. But I still need him to be here just a bit more - to function enough so that he can understand the power of communication, and then have the ability to communicate his desire and needs so that they can be met. This is my goal for him right now - to more throughly understand who he is so I can help him to be all he wants to be.
Friday, October 1, 2010
The Rain Stopped Tonight
Yesterday, across the East Coast, there were heavy rains. And it did. All day. Odd for some places, but not Syracuse NY where a sunny day in January frequently triggers UFO sightings. (There's a yellow round ball in the sky - whatever could it be???)
As has been his norm for the past several weeks, Zach has a few phrases he has been repeating spontaneously, without specific training. Currently: "duck duck duck" and either "we wish" or "I wish". Yes, wishing has returned to the Morphet household once again.
I often do not know how to refer Zach's language and speech. I sometimes refer to him as non-verbal which is inaccurate as pointed out to me by a researcher in Binghamton since he can utter a few words and does so consistently. I just cannot describe it succinctly.Currently, there is lots of babbling where I believe he is just playing with sound, babbling that has a pattern and he tends to repeat ( I believe these incomprehensible phrases mean something but have no idea what), he has single words that he can use to label items or a few actions plus request a few items, and a few phrases. But most of his vocalization I would say is non-functional at this point. His one therapist believes tht some of the babbling may even be a stim that he does when bored like tapping a finger, bobbing a knee, etc.
When Zach does speak, he is often very quiet and it can be very difficult to get him to increase his volume. He can receptively and expressively identify all letters of the alphabet, both upper and lower case, and has 24 of the associated phonetics down with the associated letter. One of the more obvious idiosyncrasies in his speech I have noticed is his difficulty in saying longer, multisyllabic words where he will frequently drop final consonants and/or middle consonants. His speech is minimally functional and rather inconsistent. We are working on increasing his receptive and expressive language at this time. He is able to do some one-step directives and we are working on two-step with some success at this point. However, on top of Zach's autism, I am wondering if he is apraxic as well.
Autism is largely a social disorder with symptoms of delayed language acquisition, idiosyncratic language, or total lack thereof. The type of idiosyncrasies in Zach's language align to many of the descriptions of verbal apraxia - trouble saying what he wants to say correctly and consistently. I am sorry to say that both of my children have acquired my lisp on top of all the other bad genes I seemed to have passed. *sigh*
Communication delays are by far our greatest concern with him. Other symptoms of his autism include little use of pointing, diminished eye contact, and stimming, namely his desire to jump when not engaged and arm tensing when excited.
I have spoken to a number of families, read books, research online, and am perplexed by Zach and his potential for meaningful language development. I sort of feel like we are in a wait and see stance. Many of the stories I read and families I speak to discuss that once intensive therapy commenced, language development flourished within one year. Well, we are way past that one year mark.
One of the most difficult aspects of autism is you are always waiting, for good things to happen, and for bad things to happen. There are the behaviors that you know your child presents in given situations, and as you are out to dinner or at church or wherever, you are just waiting to happen. A lot of times they don't. Sometimes you think you are in the clear and actually forget about them, and in your lack of attentiveness, whamo! it happens. Then there are the things that errupt out of nowhere, never to have been seen before. The known unknownsnand the unknown unknowns. I listen to what a lot of other parents say when they discuss their children who are older, and I take into consideration that as Zach matures, he may have a lot of these. But then again, it is the snowflake disorder, and every child is so different, you just don't know from day to day. There are genes, there is the disorder, there is personality, there is the environment, there is expression. The cocktail creates an endless array of possibilities that have you waiting like a sniper for the bad, and praying like a monk for the possibilities.
In the end, I think living with autism is somewhat like the rain that we had; living in a rainy climate, you know to have an umbrella, a sump pump, avoid roads that flood, eat soup for dinner. You try not to think of those people who live in San Diego.
I had an evening out with 9 other mothers from our local Families for Effective Autism Treatment group. We met at a Barnes and Noble. The drive out there in the rain seemed treacherous - I could not see the lines in the road, the rain was so heavy and it was dark. I arrived, late, but that was OK. I settled down into a chair. As I looked around the table, I noticed we are all so different!
A mother told me a story of how her 8 year old son who only had said a few single words, recently began medication (Risperdol) and within two weeks, began speaking spontaneously in sentences. My heart fluttered as she told me her story. Another mother spoke of her 16 year old son with Asperger's being asked out on a date. I was as excited as if they were my own children. As the evening progressed, I noticed that we mingled, we discussed, we talked kids, and talked life in general. The conversation never became awkward. We actually closed the place down. There were no kids to chase or watch or fear what would happen. As we exited the store, we went outside and actually talked for another half hour in front of the closed store. I noticed something else, the rain had stopped. All I could think of was how apropos that was. It would certainly rain again, this is, after all, Syracuse NY. But for one brief shining moment, a group of us weathered the storm and were blessed with a break. And it was beautiful.
As has been his norm for the past several weeks, Zach has a few phrases he has been repeating spontaneously, without specific training. Currently: "duck duck duck" and either "we wish" or "I wish". Yes, wishing has returned to the Morphet household once again.
I often do not know how to refer Zach's language and speech. I sometimes refer to him as non-verbal which is inaccurate as pointed out to me by a researcher in Binghamton since he can utter a few words and does so consistently. I just cannot describe it succinctly.Currently, there is lots of babbling where I believe he is just playing with sound, babbling that has a pattern and he tends to repeat ( I believe these incomprehensible phrases mean something but have no idea what), he has single words that he can use to label items or a few actions plus request a few items, and a few phrases. But most of his vocalization I would say is non-functional at this point. His one therapist believes tht some of the babbling may even be a stim that he does when bored like tapping a finger, bobbing a knee, etc.
When Zach does speak, he is often very quiet and it can be very difficult to get him to increase his volume. He can receptively and expressively identify all letters of the alphabet, both upper and lower case, and has 24 of the associated phonetics down with the associated letter. One of the more obvious idiosyncrasies in his speech I have noticed is his difficulty in saying longer, multisyllabic words where he will frequently drop final consonants and/or middle consonants. His speech is minimally functional and rather inconsistent. We are working on increasing his receptive and expressive language at this time. He is able to do some one-step directives and we are working on two-step with some success at this point. However, on top of Zach's autism, I am wondering if he is apraxic as well.
Autism is largely a social disorder with symptoms of delayed language acquisition, idiosyncratic language, or total lack thereof. The type of idiosyncrasies in Zach's language align to many of the descriptions of verbal apraxia - trouble saying what he wants to say correctly and consistently. I am sorry to say that both of my children have acquired my lisp on top of all the other bad genes I seemed to have passed. *sigh*
Communication delays are by far our greatest concern with him. Other symptoms of his autism include little use of pointing, diminished eye contact, and stimming, namely his desire to jump when not engaged and arm tensing when excited.
I have spoken to a number of families, read books, research online, and am perplexed by Zach and his potential for meaningful language development. I sort of feel like we are in a wait and see stance. Many of the stories I read and families I speak to discuss that once intensive therapy commenced, language development flourished within one year. Well, we are way past that one year mark.
One of the most difficult aspects of autism is you are always waiting, for good things to happen, and for bad things to happen. There are the behaviors that you know your child presents in given situations, and as you are out to dinner or at church or wherever, you are just waiting to happen. A lot of times they don't. Sometimes you think you are in the clear and actually forget about them, and in your lack of attentiveness, whamo! it happens. Then there are the things that errupt out of nowhere, never to have been seen before. The known unknownsnand the unknown unknowns. I listen to what a lot of other parents say when they discuss their children who are older, and I take into consideration that as Zach matures, he may have a lot of these. But then again, it is the snowflake disorder, and every child is so different, you just don't know from day to day. There are genes, there is the disorder, there is personality, there is the environment, there is expression. The cocktail creates an endless array of possibilities that have you waiting like a sniper for the bad, and praying like a monk for the possibilities.
In the end, I think living with autism is somewhat like the rain that we had; living in a rainy climate, you know to have an umbrella, a sump pump, avoid roads that flood, eat soup for dinner. You try not to think of those people who live in San Diego.
I had an evening out with 9 other mothers from our local Families for Effective Autism Treatment group. We met at a Barnes and Noble. The drive out there in the rain seemed treacherous - I could not see the lines in the road, the rain was so heavy and it was dark. I arrived, late, but that was OK. I settled down into a chair. As I looked around the table, I noticed we are all so different!
A mother told me a story of how her 8 year old son who only had said a few single words, recently began medication (Risperdol) and within two weeks, began speaking spontaneously in sentences. My heart fluttered as she told me her story. Another mother spoke of her 16 year old son with Asperger's being asked out on a date. I was as excited as if they were my own children. As the evening progressed, I noticed that we mingled, we discussed, we talked kids, and talked life in general. The conversation never became awkward. We actually closed the place down. There were no kids to chase or watch or fear what would happen. As we exited the store, we went outside and actually talked for another half hour in front of the closed store. I noticed something else, the rain had stopped. All I could think of was how apropos that was. It would certainly rain again, this is, after all, Syracuse NY. But for one brief shining moment, a group of us weathered the storm and were blessed with a break. And it was beautiful.
Subscribe to:
Posts (Atom)