It's fascinating to see where science is taking us:
Our Life
Wordle of the last 8 months
Saturday, September 27, 2014
Thursday, September 25, 2014
Tests, Tests, and More Tests
Today we took Karis to one of the smallish local children's hospitals for a neurology screen. The doctor asked for her history, and we told the same story for the millionth time: child developed normally, interacted appropriately, spoke magnificently, then child inexplicably lost all skills and regressed to the level of a 12 month old. Child "checks out" frequently during the course of the day, could be attributed to autism, could be the sign of a seizure disorder or other condition.
The neurologist believes that a full neurology work-up is in order. That means getting admitted to the hospital for a couple of days for an MRI, EEG, metabolic lab work, etc., etc., etc... We are just waiting for the referral to go through, then we will call to schedule the procedures.
(Joe: Why don't you just say "small" instead of "smallish?" Me: Because it isn't small; it's just smallish.)
The neurologist believes that a full neurology work-up is in order. That means getting admitted to the hospital for a couple of days for an MRI, EEG, metabolic lab work, etc., etc., etc... We are just waiting for the referral to go through, then we will call to schedule the procedures.
(Joe: Why don't you just say "small" instead of "smallish?" Me: Because it isn't small; it's just smallish.)
Goals for Zachary 2014
Issue: TEMPER
Solution:
Respond calmly and slowly.
Don't jump up and respond either negatively or positively. In
the past I've stood up suddenly with a stern look on my face, trying to let him
know that I mean business. My new policy is to move slowly and calmly.
When he gets angry and lashes out verbally about something, say,
"Ok, thanks for telling me you want a drink. Next time you can just say,
'I want water.'" If he is lashing out in a way that harms other people or property, I just physically restrain him and explain that I can't allow him to to hurt others until he calms down. While I'm holding him, I sometimes give him gentle squeeze on his arms, legs, and head, and he really likes this. It acts as a tension reliever or something. I can't explain it, it just works.
Zach has a strong need for approval and affection, and heaping the love on him goes a long way in preventing any challenging behaviors. Also, check out this video on intense energy by the good folks at the Autism Treatment Center of America (home of the Son-Rise Program):
Issue: Poor
sleep leads to poor behavior during the day
Solution: Make sure Z is getting enough exercise. A couple hours at the playground each day
help him sleep better at night. Better
sleep makes him a happier kiddo.
Issue: Limited
language
Solution:
encourage talking
When he gets angry and lashes out about something, say,
"ok, thanks for telling [screaming at]me. Next time you can just say, 'I
want water.'" This encourages talking.
Zach generally talks with the sole goal of getting his needs
met. He's almost 5, and it would be nice for him to branch out and talk about
other things. While playing and reading stories we can say, "which
do you like better? I like this one better because he's blue."
He's not interested in reading stories right now, but it's ok to approach him once or twice a day with a story and see if he's interested.
Issue: Doesn’t
follow directions
Solution: Use playtime to make “suggestions” that
eventually will evolve into directions.
“Zach,
let’s jump on the pillow instead of the sofa!”
“Can I have a turn?” “How about
if we...?”
Issue: Learning
patience
Solution: Make a game out of sitting quietly with the timer. Start with one minute, then two, then three...
Other ideas??
Issue: Rigid and
inflexible, doesn’t like change
Solution: This is the first week ever that Zach has
Goals for Karis 2014
ENCOURAGE EYE CONTACT
Solution: offer cheers
and praise whenever Karis looks at you. "I see you looking at me! Great
job!" "I love it when I can see your pretty brown eyes! Thanks for
looking." "Great job looking, Karis! Hooray!" Be specific what
the praise is for. Don't say, "good job" without saying why.
Also
position yourself for optimal eye-contact:
in front of her and a little below.
Be goofy, dance and prance and spin to get her to look at you.
Check out my blog articles on "Maximizing Eye Contact" for some great ideas by the Son-Rise Team.
ENCOURAGE SPEECH
Solution: praise
speech attempts, encourage Karis to ask for what she wants (water, trains,
etc.), use thomas and trains to talk about speech (can use names of trains,
colors, numbers), play games to encourage speech---such as- tickle game (say
"tickle" over and over as you tickle, vary tone, pitch, tempo, and
expression, then when she wants more, ask for her to say "tickle."
Ask once or twice, then tickle anyway, even if she doesn't perform. You want to
be approachable and trustworthy.). Trying it with "dance,"
"spin," "swing."
Praise her like crazy when she speaks, even if you don't understand what she's saying. Praise her like crazy on steroids when she uses speech appropriately, both prompted speech and spontaneous speech.
ENCOURAGE PRETEND PLAY
Solution: join, then
introducing one more thing. E.g. Karis lines up her trains, you line up something
else (she won't share the trains), or help her line the truisms if she'll let
you. When she looks at you, praise eye contact, then introduce one more thing, "look!
Thomas is going down the slide!" "Percy is dancing!"
Issue: Potty training
Solutions: I have lots of ideas on this one, but bigger fish to
fry right now.
Maximizing eye contact I (videos)
One of our big goals for Karis is learning to make spontaneous and sustained eye contact. Here are a few ideas for how to achieve this:
Wednesday, September 24, 2014
How our Lives have Changed
There are a lot of autistic people out there who are high-functioning. They think differently, and act differently, but they can still get their needs met and look after themselves. That's how Zachary (almost 5) is. He has some definite issues, but I think with intervention and maturity he'll be able to come out of a lot of it and function well.
I was struck this week when I was lying on the floor with Karis (39 months) and Charlie (15 months) walked in. The 5 minutes Charlie was in the room, he asked for a drink ("Deent!"), initiated a game of catch ("Ball!" he exclaimed, as he threw the ball towards me.), and got his shoes and requested to go bye-bye ("Ba-ba"). It hurt my heart a bit that my 1-year-old's verbal and non-verbal skills now exceeded my 3-year-old's skills. While Charlie is learning new words and skills every day, Karis' growth has been pretty stagnant over the summer, after her major regression over the last school year.
If we were in the US, Karis would be getting 40 hours of behavioral therapy each week and Zachary would be getting 20-40 hours. I knew when we received our diagnosis that our lives would change, but I didn't realize that the entire weight of this change would now be on my shoulders. Parents have been trained to do behavioral therapy before, and done so very successfully. I know we can do this if we really dedicate ourselves to learning and executing the program, it's just the logistics that are challenging. I can spend an hour with Karis in our play-therapy room, or I can spend an hour reading a book about autism that will make me a more effective playroom facilitator in the long run-while I ignore Karis and she lies on the floor staring off into space. Why does every decision I make seem like the wrong decision?
I get up at 5:30 to work out (but often end up blogging or making lists instead, since my head is always full of thoughts I need to put to paper). I make breakfast around 7. I try to spend time with Karis after that, but it seems that everyone needs something from me and keeps interrupting, then I snap at the kids, and then I feel guilty for snapping at the kids when their needs are legitimate as well.* At 10 Charlie goes down for a nap. I try to knock out Maggie and Paul's schoolwork then while an older child plays with Karis (or an older child supervises school while I keep working with K and Z). At noon, Charlie wakes up and we eat lunch. At some point in the morning usually I send an older child to the store to pick up eggs or milk or whatever.
In the early afternoon we spend more time in the playroom, then we go to the park around 2 while Charlie goes down for nap #2. I'm not sure what we'll do in the winter when it's too cold to comfortably go out, but I don't have time to worry about that now. Usually around 4, Z and K are so hungry, so they eat and early dinner, and then we work some more. Then they eat again around 7 and go to sleep around 8.
Every activity that we do is designed to promote eye contact and speech, and it's hard to always bring my A-Game. One of the principles of the Son-Rise program is the three E's: energy, excitement, and enthusiasm in your interactions with your child, because you want to show them that our world is an exciting and wonderful place to be. I'm not an enthusiastic person by nature, so it's hard to muster up that kind of zeal hour after hour after hour after hour....
We are staffed about half-way on volunteers, so I'm hoping that eventually I'll have 2 people coming each morning to work individually with Z and K so that I can do the mom-thing to my other 5 kiddos in the mornings, then dedicate myself more fully to Karis (and Zach somewhat) in the afternoons and evenings.
Every night I make notes, I review notes, I write lists, I email volunteers. It's exhausting, and I feel so inadequately equipped for this. The last few days I've felt such a sense of fear: fear that we're making the wrong choice by staying in Germany, fear that I won't be effective enough to help Karis, fear that she will regress worse than she already has...
I do think that I probably am expecting too much of myself, especially right in the beginning. I simply cannot do it all,** so I need to prioritize until things start falling into place a little better. Is working the program more important that troubleshooting the dietary issues? Is working the program more important than spending lots of time recruiting and training volunteers? Is working the program more important than washing the dinner dishes?
Once I said to Joe, "Autism will always be a part of our family, but we need to make sure it doesn't consume us to the point of neglecting everything else. Let's put it to bed at 9:00 and just focus on our own relationship." Somehow, in the midst of all the craziness, I've forgotten to take my own advice. There will always be more to learn about autism, more to discuss, more things to try, but I don't want to forget all the terrific stuff that makes being a family so great.
Once I said to Joe, "Autism will always be a part of our family, but we need to make sure it doesn't consume us to the point of neglecting everything else. Let's put it to bed at 9:00 and just focus on our own relationship." Somehow, in the midst of all the craziness, I've forgotten to take my own advice. There will always be more to learn about autism, more to discuss, more things to try, but I don't want to forget all the terrific stuff that makes being a family so great.
*I may be sending M & P to school. I haven't decided yet. It would enable me to give more attention to K and Z, but I'm not sure if it will just create more work for me in the long run.
**But I want to do it all!!!!
Monday, September 22, 2014
Weekend update September 20-21
This was the first weekend I really dedicated myself to full-time play therapy with Karis. I woke up, made breakfast, worked with K from 8:30-11:30, made lunch, worked with K from 1-4, ran to eg eggs, did some reading about autism in the car before heading home, made dinner, then worked with Karis from 6-8. It was a full 8 hour day.
Great things we've seen: Karis played "catch" for perhaps the first time ever (or at least the first time since her regression last year. She also said a few new words: "Gordo" and "express," both Thomas-related words of course. She's still isn't really saying meaningful words. She babbles about Thomas and Percy, but won't ask for food or water. But it's still a good sign that she's talking more. Also-early this week I bumped into her in the hallway and said, "I'm sorry!" Then she walked down the hallway saying, "I'm sorry, I'm sorry..." over and over. Echolalia is a classic sign of autism, but for now we'll take any gains in vocabulary any way we can get it. :)
Great things we've seen: Karis played "catch" for perhaps the first time ever (or at least the first time since her regression last year. She also said a few new words: "Gordo" and "express," both Thomas-related words of course. She's still isn't really saying meaningful words. She babbles about Thomas and Percy, but won't ask for food or water. But it's still a good sign that she's talking more. Also-early this week I bumped into her in the hallway and said, "I'm sorry!" Then she walked down the hallway saying, "I'm sorry, I'm sorry..." over and over. Echolalia is a classic sign of autism, but for now we'll take any gains in vocabulary any way we can get it. :)
It's the first day of fall!
And boy, is it chilly!
Today was a pretty good day. It was day 1 of "Operation Unplugged." I confess-I let Zach play electronics too often and too long. He's a tricky kid to manage, and I don't always have time to manage the tantrums that go on for hours and hours. Giving him my iPhone was an easy way to buy me some peace to make dinner or homeschool or call the plumber, etc. I knew his brain won't be able to heal unless we could get him away from screens totally, so today was the day we bit the bullet.
I braved myself and prepared for the worse-the tantrums, the whining, the violence...but I was shocked, I tell you, utterly shocked and unprepared for the reality. And here's what happened-he was a happy, interactive, delightful child. All day long. The end. I really couldn't believe it, especially since we tried this before (I ultimately caved in after a few hours of Z throwing heavy objects at people).
Today was also the first day we had real, actual volunteers come to the house to work with Z and K one-on-one. It went wonderfully well, so I am happy about that, too! We are going to slowly build up to a full schedule (2 people coming each morning; one for Z and one for K), but we have quite a terrific crew of people coming so far.
The afternoon I took the middle 4 to the playground while the baby napped. Karis just lay on the ground the one hour and thirty-right minutes, until finally I convinced her to go down the slide. I went with her and said the word "slide" over and over. About the fourth time we went down she started saying it with me, so hurray for Karis!
Sometimes I can't tell if we're making progress of not, especially on days like today where she has lots of down time and isn't really interacting. One of my goals is to spend the weekends really documenting how much time she spends in a withdrawn state vs. an interactive one, just for my own records and peace-of-mind.
Today was a pretty good day. It was day 1 of "Operation Unplugged." I confess-I let Zach play electronics too often and too long. He's a tricky kid to manage, and I don't always have time to manage the tantrums that go on for hours and hours. Giving him my iPhone was an easy way to buy me some peace to make dinner or homeschool or call the plumber, etc. I knew his brain won't be able to heal unless we could get him away from screens totally, so today was the day we bit the bullet.
I braved myself and prepared for the worse-the tantrums, the whining, the violence...but I was shocked, I tell you, utterly shocked and unprepared for the reality. And here's what happened-he was a happy, interactive, delightful child. All day long. The end. I really couldn't believe it, especially since we tried this before (I ultimately caved in after a few hours of Z throwing heavy objects at people).
Today was also the first day we had real, actual volunteers come to the house to work with Z and K one-on-one. It went wonderfully well, so I am happy about that, too! We are going to slowly build up to a full schedule (2 people coming each morning; one for Z and one for K), but we have quite a terrific crew of people coming so far.
The afternoon I took the middle 4 to the playground while the baby napped. Karis just lay on the ground the one hour and thirty-right minutes, until finally I convinced her to go down the slide. I went with her and said the word "slide" over and over. About the fourth time we went down she started saying it with me, so hurray for Karis!
Sometimes I can't tell if we're making progress of not, especially on days like today where she has lots of down time and isn't really interacting. One of my goals is to spend the weekends really documenting how much time she spends in a withdrawn state vs. an interactive one, just for my own records and peace-of-mind.
Celebrating!! (videos)
The Son-Rise program emphasizes really celebrating your child. Love them where they are, enjoy your time with them, but then when they reach out of their comfort zone by giving eye contact, using words, showing flexibility, etc., make sure you really celebrate that moment!
Here are some great videos about celebration:
Celebrating eye contact will encourage more eye contact:
Sunday, September 21, 2014
"Joining" (Video)
The principle of "joining" is the cornerstone of the Son-Rise Program. ABA therapy, for example, will try to discourage a child from his repetitive behaviors, but SRP believes that in joining, we can create a special bond that will show a child how much we value him.
If your child lies on the floor for hours on end, lining up his trains from end to end; you do the the same! If your child flaps his hands and spins in circles; you do the same! This is how connections are made!
As you "ism" with your child, eventually they will glance your way. Cheer and celebrate the eye contact they give you! It will help them reach out to you more and more!
If your child lies on the floor for hours on end, lining up his trains from end to end; you do the the same! If your child flaps his hands and spins in circles; you do the same! This is how connections are made!
As you "ism" with your child, eventually they will glance your way. Cheer and celebrate the eye contact they give you! It will help them reach out to you more and more!
Friday, September 19, 2014
The Joke's On Me
Maggie has struggled with learning delays for most of her 8 young years. She attended a special-needs preschool for a while, because I didn't feel equipped to handle her needs. It's funny, though. I visited her classroom a few times, and was surprised that they weren't doing anything with her that I wasn't already doing at home. I thought they had some magic skills that I don't possess because I don't have a Master's in Special Education.
First of all, I have the greatest respect for teachers (but only the good ones!). I think it's wonderful that a person would devote his/her life to children. I also think it's wonderful how they are trained to help so many children with so many different disabilities. While I will never know how to work with every learning disability out there, I CAN become an expert in my child and her learning struggles. There are several good books out there (THIS one is the best!) and people (HSLDA has 3 special needs consultants) who can help you.*
After Maggie and I spent the last several years working hard, we finally got to the point last year where I felt like she wasn't dreadfully behind all her peers (After the "education experts" said this would never happen!!!) I was looking forward to this year being a little easier, a littler quieter, a little more fun. I was hoping to escape once in a while to meet Joe for lunch, or do some sewing now and then.
How does the saying go? Man plans; God laughs? I spent a couple of days grieving-grieving the little girl I lost to autism,** grieving the "big plans" I had made to lunch with my husband, grieving the all the times I would never be able to get pizza delivery because of our dietary changes... After shedding a few tears for a few days while cradling nothing but Haagen Dazs for comfort, I stood up, brushed myself off, and now stand ready to fight the good fight.
I find it interesting how all of the challenges I've had to work through with Maggie now present themselves again: the struggle with whether to send Karis and Zach to school and embarking on a new nutrition plan. Now, a few years later, I'm able to really weigh the facts and make decisions more confidently.
We visited the local developmental preschool last week. It's a daily program for 2 1/2 hours a day. Zach just screamed and threw things the entire time we were there. The reality is, one-on-one therapy will be much more effective in reaching Zach and Karis than being one (or two) of 10 children in a classroom. "It'll be OK," they told me, "we'll just give him his own aide." But it won't be OK. He'll be miserable, he'll make everyone else miserable, he won't be receptive to any type of learning. Plus the disruption of getting everyone up, dressed, fed on a special diet, driving 45 minutes one-way... No thanks.***
*Though, sometimes it is best to send you child to school, if you really don't know where to start or don't have the option to homeschool. Just do what's best for your family and good grief, don't feel guilty about it!
**Zach was always a bit quirky, so I knew he wasn't wired typically early on. Karis' regression into autism was very painful for me, because she didn't start out that way.
***Not today, anyway. I completely and wholly reserve the right to change my mind at any time.
First of all, I have the greatest respect for teachers (but only the good ones!). I think it's wonderful that a person would devote his/her life to children. I also think it's wonderful how they are trained to help so many children with so many different disabilities. While I will never know how to work with every learning disability out there, I CAN become an expert in my child and her learning struggles. There are several good books out there (THIS one is the best!) and people (HSLDA has 3 special needs consultants) who can help you.*
After Maggie and I spent the last several years working hard, we finally got to the point last year where I felt like she wasn't dreadfully behind all her peers (After the "education experts" said this would never happen!!!) I was looking forward to this year being a little easier, a littler quieter, a little more fun. I was hoping to escape once in a while to meet Joe for lunch, or do some sewing now and then.
How does the saying go? Man plans; God laughs? I spent a couple of days grieving-grieving the little girl I lost to autism,** grieving the "big plans" I had made to lunch with my husband, grieving the all the times I would never be able to get pizza delivery because of our dietary changes... After shedding a few tears for a few days while cradling nothing but Haagen Dazs for comfort, I stood up, brushed myself off, and now stand ready to fight the good fight.
I find it interesting how all of the challenges I've had to work through with Maggie now present themselves again: the struggle with whether to send Karis and Zach to school and embarking on a new nutrition plan. Now, a few years later, I'm able to really weigh the facts and make decisions more confidently.
We visited the local developmental preschool last week. It's a daily program for 2 1/2 hours a day. Zach just screamed and threw things the entire time we were there. The reality is, one-on-one therapy will be much more effective in reaching Zach and Karis than being one (or two) of 10 children in a classroom. "It'll be OK," they told me, "we'll just give him his own aide." But it won't be OK. He'll be miserable, he'll make everyone else miserable, he won't be receptive to any type of learning. Plus the disruption of getting everyone up, dressed, fed on a special diet, driving 45 minutes one-way... No thanks.***
*Though, sometimes it is best to send you child to school, if you really don't know where to start or don't have the option to homeschool. Just do what's best for your family and good grief, don't feel guilty about it!
**Zach was always a bit quirky, so I knew he wasn't wired typically early on. Karis' regression into autism was very painful for me, because she didn't start out that way.
***Not today, anyway. I completely and wholly reserve the right to change my mind at any time.
"So how's it going?"
That's what they ask. Followed by, "I don't know how you do it."
It's going OK. We are on day 12 of GAPS. I am spending as much time one-on-one with my special children as I can, while trying not to neglect my other other children. There's just no way to do it all, but I'm cool with being a failure. At least I'm trying.
I've seen some super-postive things happening with my kids. First of all, the last two days, Karis has gone out of her way to seek me out. Months ago she would disappear into her room and we would never see her again, now she wants me to be with her and play with her. I think that's wonderful. She is also talking to me. Granted, all she says is, "Percy...Thomas...Thomas...Gordon...Thomas...Percy..." but at least she's talking! So I just respond, "Thomas is the #1 blue engine, isn't he? Percy is his best friend. What color is Percy? Percy is GREEN." I am really so overjoyed.
Zachary's tantrums have really decreased. A couple of days ago he found some butter in the refrigerator that he wanted to eat, so I took it away. He began slamming doors, which is usually the way he starts his 1-2 hour long tantrums. I matter-of-factly said (according to Son-Rise Program principles), "Zach, thanks for telling me that you're mad about the butter," and he instantly stopped. I was floored. I've been reading books on "the explosive child," and "the child with intense emotions," and "the strong-willed child" and haven't made a dent.
Now, it is common for his tantrums to ebb and flow, so we could just be in a down phase right now. Still, I'm pretty happy with where we are.
I feel like there's so much more I want to do in our work. I'd like to type up some forms so we can keep better track of her eye contact and vocabulary. We have a few dietary issues I'd like to take more time troubleshooting, and I haven't entirely resolved our sleep problems. I'd like to do more reading to be a more effective at facilitating in our play therapy. That all takes time, though, and I can't just ignore the kids while I go off and read. I'll just have to squeeze some time in after bed time, I suppose.
It's going OK. We are on day 12 of GAPS. I am spending as much time one-on-one with my special children as I can, while trying not to neglect my other other children. There's just no way to do it all, but I'm cool with being a failure. At least I'm trying.
I've seen some super-postive things happening with my kids. First of all, the last two days, Karis has gone out of her way to seek me out. Months ago she would disappear into her room and we would never see her again, now she wants me to be with her and play with her. I think that's wonderful. She is also talking to me. Granted, all she says is, "Percy...Thomas...Thomas...Gordon...Thomas...Percy..." but at least she's talking! So I just respond, "Thomas is the #1 blue engine, isn't he? Percy is his best friend. What color is Percy? Percy is GREEN." I am really so overjoyed.
Zachary's tantrums have really decreased. A couple of days ago he found some butter in the refrigerator that he wanted to eat, so I took it away. He began slamming doors, which is usually the way he starts his 1-2 hour long tantrums. I matter-of-factly said (according to Son-Rise Program principles), "Zach, thanks for telling me that you're mad about the butter," and he instantly stopped. I was floored. I've been reading books on "the explosive child," and "the child with intense emotions," and "the strong-willed child" and haven't made a dent.
Now, it is common for his tantrums to ebb and flow, so we could just be in a down phase right now. Still, I'm pretty happy with where we are.
I feel like there's so much more I want to do in our work. I'd like to type up some forms so we can keep better track of her eye contact and vocabulary. We have a few dietary issues I'd like to take more time troubleshooting, and I haven't entirely resolved our sleep problems. I'd like to do more reading to be a more effective at facilitating in our play therapy. That all takes time, though, and I can't just ignore the kids while I go off and read. I'll just have to squeeze some time in after bed time, I suppose.
What's on my Nightstand
Stuff that I will probably never have time to read:
Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with SensoryProcessing Issues
Biel, Lindsey
Behavioral Intervention for Young Children With Autism: A Manual for Parents and Professionals
Catherine Maurice
Mommy, Teach Me: Preparing Your Preschool Child for a Lifetime of Learning
Barbara Curtis, Dr. William Sears
Autism Breakthrough: The Groundbreaking Method That Has Helped Families All Over the World
Raun K. Kaufman(Already read, but need to read again and take notes!)
Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life
Lynn Kern Koegel PhD, Claire LaZebnik
Robert Parish, Susan Senator
Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders; ... Guide for Parents and Professionals
Caren Haines RN
(Recommended to me by our developmental psychologist; seizure disorder can frequently manifest itself as autism, and Karis shows some signs that warrant investigation. EEG scheduled Sept 25.)
Jesus and the Jewish Roots of the Eucharist: Unlocking the Secrets of the Last Supper
Brant Pitre, Scott Hahn, Scott Hahn
Real Choices
Frederica Mathewes-Green
The Game: A novel of suspense featuring Mary Russell and Sherlock Holmes
Laurie R. King
GAPS Guide: Simple Steps to Heal Bowels, Body, and Brain
Baden Lashkov
(Already read this 5 years ago for Maggie, but ordered the newest edition and am about halfway through)
Baden Lashkov
(Already read this 5 years ago for Maggie, but ordered the newest edition and am about halfway through)
Biel, Lindsey
Behavioral Intervention for Young Children With Autism: A Manual for Parents and Professionals
Catherine Maurice
Mommy, Teach Me: Preparing Your Preschool Child for a Lifetime of Learning
Barbara Curtis, Dr. William Sears
Autism Breakthrough: The Groundbreaking Method That Has Helped Families All Over the World
Raun K. Kaufman(Already read, but need to read again and take notes!)
Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life
Lynn Kern Koegel PhD, Claire LaZebnik
- The Out-of-Sync Child
- Carol Kranowitz
Robert Parish, Susan Senator
Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders; ... Guide for Parents and Professionals
Caren Haines RN
(Recommended to me by our developmental psychologist; seizure disorder can frequently manifest itself as autism, and Karis shows some signs that warrant investigation. EEG scheduled Sept 25.)
Jesus and the Jewish Roots of the Eucharist: Unlocking the Secrets of the Last Supper
Brant Pitre, Scott Hahn, Scott Hahn
Real Choices
Frederica Mathewes-Green
The Game: A novel of suspense featuring Mary Russell and Sherlock Holmes
Laurie R. King
Thursday, September 18, 2014
Autism Solution: Getting Started with the Son-Rise Program
This video is an general overview of the Son-Rise Program. It's almost an hour long, so get comfortable and pop some popcorn!
What it means to volunteer
Volunteering means:
I realized early on that the only way I would be able to give both Karis and Zachary (and Rochelle, AJ, Maggie, Paul, Charlie, and Joe) the attention they require and deserve would be by the Grace of God and through the kind sacrifices of other people.
Ideally, our volunteers will come in the morning to work the program individually with Zach and Karis so I can homeschool, be a mommy, and make breakfast, lunch, and dinner (at least assembled and put in the crockpot). Then I can devote myself more fully to working with Karis especially, but Zach as well in the afternoon and evening.
We can all learn new ideas and techniques from each other, so feedback is an important part of the learning experience. I'll check up on our volunteers now and then, and offer suggestions for improved interaction. If they watch me playing with K and Z, they can point out things they see as well.
We'll have team meetings two evenings a month. I'll bring some yummy food, then we'll review the highlights and lowlights, brainstorm some innovative solutions, set new goals, and learn from each other.
I realized early on that the only way I would be able to give both Karis and Zachary (and Rochelle, AJ, Maggie, Paul, Charlie, and Joe) the attention they require and deserve would be by the Grace of God and through the kind sacrifices of other people.
Ideally, our volunteers will come in the morning to work the program individually with Zach and Karis so I can homeschool, be a mommy, and make breakfast, lunch, and dinner (at least assembled and put in the crockpot). Then I can devote myself more fully to working with Karis especially, but Zach as well in the afternoon and evening.
We can all learn new ideas and techniques from each other, so feedback is an important part of the learning experience. I'll check up on our volunteers now and then, and offer suggestions for improved interaction. If they watch me playing with K and Z, they can point out things they see as well.
We'll have team meetings two evenings a month. I'll bring some yummy food, then we'll review the highlights and lowlights, brainstorm some innovative solutions, set new goals, and learn from each other.
Monday, September 15, 2014
Hubbub and Hollabaloo
It's a zoo here, really. I have 7 kids. Karis really needs 40+ hours of behavioral therapy a week. Zachy needs 20-40. Plus I homeschool. Don't think I haven't given consideration to the fact that I am in way over my head here.
The GAPS diets is extremely time consuming. I am unable to procure ABA therapy, which leaves it entirely up to me to provide the quality and quantity of time necessary for Z and K to thrive.
Rochelle asked not to go to school. She promises she will be responsible and self-motivated enough to keep on top of her school work and help around the house. Besides, public high schools do not accept credit from homeschooled students, so despite being about 1/2 done with high school, she's be effectively starting from scratch.
AJ really can't go school-he's 13 and taking college level courses. It would do him a real disservice to have to go back and sit through middle school classes.
Maggie doesn't want to go to school-she has some learning disabilities and lots of general anxiety and really does better with me teaching her. She and Paul really have been spending lots of time arguing and interrupting my work with Karis, though, so the jury is still out on this one. I'll re-evaluated once our full program is up and running.
Paul doesn't care really, but since he's doing all the same stuff Maggie is, it's not like it creates extra work.
There is a special needs preschool we are looking into for Zach and Karis. IT's 2 1/2 hours a day, and we are about 90% sure we aren't going to take that route. I was taught at the Son-rise program that really individual therapy is more effective in the long run than a school setting, and I believe it... It's just finding the time and the help to implement it.
Then there's Charlie. Too little for school, and that's ok. He's such a cutie and I'm glad he's always hanging around.
We've hired someone to help with the housework a couple times a week. I've recruited some volunteers to work with Z and K in the mornings so I can get meals made and homeschooling done. Just managing all those people is a job itself. We have goals to write out and meetings to plan...
I feel like I have so much to learn. I want to read some Son-rise blog posts or watch training DVDs because I feel like it would help me be a better play-therapist, but that's time I could be spending with Zach and Karis. In fact, Karis-who's supposed to be sleeping-just came in to find me. It's time to sign off and go hang out with my sweetie!
The GAPS diets is extremely time consuming. I am unable to procure ABA therapy, which leaves it entirely up to me to provide the quality and quantity of time necessary for Z and K to thrive.
Rochelle asked not to go to school. She promises she will be responsible and self-motivated enough to keep on top of her school work and help around the house. Besides, public high schools do not accept credit from homeschooled students, so despite being about 1/2 done with high school, she's be effectively starting from scratch.
AJ really can't go school-he's 13 and taking college level courses. It would do him a real disservice to have to go back and sit through middle school classes.
Maggie doesn't want to go to school-she has some learning disabilities and lots of general anxiety and really does better with me teaching her. She and Paul really have been spending lots of time arguing and interrupting my work with Karis, though, so the jury is still out on this one. I'll re-evaluated once our full program is up and running.
Paul doesn't care really, but since he's doing all the same stuff Maggie is, it's not like it creates extra work.
There is a special needs preschool we are looking into for Zach and Karis. IT's 2 1/2 hours a day, and we are about 90% sure we aren't going to take that route. I was taught at the Son-rise program that really individual therapy is more effective in the long run than a school setting, and I believe it... It's just finding the time and the help to implement it.
Then there's Charlie. Too little for school, and that's ok. He's such a cutie and I'm glad he's always hanging around.
We've hired someone to help with the housework a couple times a week. I've recruited some volunteers to work with Z and K in the mornings so I can get meals made and homeschooling done. Just managing all those people is a job itself. We have goals to write out and meetings to plan...
I feel like I have so much to learn. I want to read some Son-rise blog posts or watch training DVDs because I feel like it would help me be a better play-therapist, but that's time I could be spending with Zach and Karis. In fact, Karis-who's supposed to be sleeping-just came in to find me. It's time to sign off and go hang out with my sweetie!
Gut and Psychology Syndrome
http://www.gaps.me
So this is what we're doing. A grain-free, sugar-free, lactose-free diet. Zachary will eat pizza 3 times a day if you let him, and I'll be honest, there are days I let him. If his tummy is full, his behavior is so much more bearable, but sometimes he goes days without eating, and then we get trapped in this ugly downward spiral...
While I was at the Son-Rise Workshop, one of the facilitators declared, "No autistic child has ever starved himself to death." So I just had to believe (and it was really, really hard) that my children would not be the first to do so. I'm not going to lie, it hasn't been easy, but they are finally in a good eating schedule.
The diet is very restrictive in the beginning (only boiled meats, boiled veggies, and broth) and then more complex foods are gradually added.We've had a lot of hiccups, so I feel like I have to keep resetting the clock back to day 1 every single day. Today Karis ate a pencil eraser. I'm pretty sure that violates every GAPS principle out there. I guess tomorrow will be day 1 again.
So this is what we're doing. A grain-free, sugar-free, lactose-free diet. Zachary will eat pizza 3 times a day if you let him, and I'll be honest, there are days I let him. If his tummy is full, his behavior is so much more bearable, but sometimes he goes days without eating, and then we get trapped in this ugly downward spiral...
While I was at the Son-Rise Workshop, one of the facilitators declared, "No autistic child has ever starved himself to death." So I just had to believe (and it was really, really hard) that my children would not be the first to do so. I'm not going to lie, it hasn't been easy, but they are finally in a good eating schedule.
The diet is very restrictive in the beginning (only boiled meats, boiled veggies, and broth) and then more complex foods are gradually added.We've had a lot of hiccups, so I feel like I have to keep resetting the clock back to day 1 every single day. Today Karis ate a pencil eraser. I'm pretty sure that violates every GAPS principle out there. I guess tomorrow will be day 1 again.
Zachy Q
Zachary was the sweetest baby ever. He wanted to be held every day, all day long for the first 4.8 years of his life, which includes today. He was born in Hawaii, and was really ahead of the curve when it came to gross motor skills. He was crawling, walking (and climbing out of his crib) incredibly early. He was always a terrible sleeper. The year he turned 2, I stood outside his room and escorted him to back to bed (followed by other disciplinary measures as the evening wore on) EVERY SINGLE NIGHT for over 9 months with100% consistency and made zero progress in getting Zachy to stay in bed and sleep. Eventually I just gave up and let him stay up with us. When Joe and I would go to bed at night, he would follow us there and lay between us. His sleep got worse and worse until eventually he was only sleeping a couple of hours at night. We started using Melatonin in spring 2014, and that has really helped. He has improved so much, even though he still isn't a terrific sleeper.
We moved to Leavenworth the summer before he turned 3. That was about the time we saw his temper start to flare. I had a pretty rough pregnancy with Charlie, so I attributed a lot of his problems to lack of consistent discipline (tired mommy syndrome). We began spending more time with Zach, while maintaining a zero-tolerance policy for tantrums, which really didn't seem to help. It seemed he was in time-out all day. In fact, some days he WAS in time out for the entire day.
He also had some odd little idiosyncrasies. While we lived in Hawaii, he wore his bathing suit all day, every day (he had several he alternated between). He wanted to go to the beach, he said, and we thought it was cute and funny. When we moved to Kansas in the summer he continued to wear his bathing suit. Then as the weather got colder and colder we could not get him out of that suit. Eventually we hid all the bathing suits and he began wearing black sweat pants and certain long sleeved shirts. Now, here we are, two years later, and he will still only wear sweat pants and long sleeved shirts (he has 4 shirts with faces that he rotates).
He's happy to take a bath, if it's his idea. Otherwise he will raise quite a fuss. He is just very rigid about his world.
Some notable tantrums: I left on an errand, leaving Z with Rochelle. He was so mad that I left that he shattered the screen of our big TV.
He wanted a smoothie, and I was making breakfast for Joe (4 poached eggs in the microwave, it takes 2 minutes of my attention at the most). He started yelling and screaming and knocking over chairs because I wouldn't do what he wanted that instant.
Zach was diagnosed with autism this spring. While he has good eye contact and basic communication, his hyper-rigidity and volatile temper makes it difficult for him to function in life.
We moved to Leavenworth the summer before he turned 3. That was about the time we saw his temper start to flare. I had a pretty rough pregnancy with Charlie, so I attributed a lot of his problems to lack of consistent discipline (tired mommy syndrome). We began spending more time with Zach, while maintaining a zero-tolerance policy for tantrums, which really didn't seem to help. It seemed he was in time-out all day. In fact, some days he WAS in time out for the entire day.
He also had some odd little idiosyncrasies. While we lived in Hawaii, he wore his bathing suit all day, every day (he had several he alternated between). He wanted to go to the beach, he said, and we thought it was cute and funny. When we moved to Kansas in the summer he continued to wear his bathing suit. Then as the weather got colder and colder we could not get him out of that suit. Eventually we hid all the bathing suits and he began wearing black sweat pants and certain long sleeved shirts. Now, here we are, two years later, and he will still only wear sweat pants and long sleeved shirts (he has 4 shirts with faces that he rotates).
He's happy to take a bath, if it's his idea. Otherwise he will raise quite a fuss. He is just very rigid about his world.
Some notable tantrums: I left on an errand, leaving Z with Rochelle. He was so mad that I left that he shattered the screen of our big TV.
He wanted a smoothie, and I was making breakfast for Joe (4 poached eggs in the microwave, it takes 2 minutes of my attention at the most). He started yelling and screaming and knocking over chairs because I wouldn't do what he wanted that instant.
Zach was diagnosed with autism this spring. While he has good eye contact and basic communication, his hyper-rigidity and volatile temper makes it difficult for him to function in life.
Karis Jane
Karis has a rough start to life. I was so sick early in the pregnancy that I couldn't keep anything down. While Zofran initially took the edge off slightly, after a few weeks I began vomiting again regardless, so I discontinued the medication.
At 13 weeks, days after my stomach started settling, I began gushing blood. I feared that we had lost her. After hours of sitting in the waiting room of the ER, we were finally taken back and an ultrasound revealed out little peanut on the screen, healthy and (I presume) happy.
Karis was born 10 days after her due date. My water broke in the car while out running errands (Joe was driving), and he insisted we go immediately to the hospital. I wanted to go home and labor in the quiet of my bedroom, but I finally acquiesced when it was apparent he wouldn't budge. When I arrived at triage, the nurses calmly, but quickly attached an oxygen mask to my face, then began moving me from side to side while continuing to measure Karis' vitals. Apparently when my water broke, she descended on her umbilical cord and compressed it with her head-cutting off her "lifeline." Despite all of her early trauma she emerged into the outside world no worse for wear, with beautiful APGAR scores, and spent her first two years developing normally. In fact, by the time she was two, we were convinced we had a little genius on our hands. She had beautiful, meaningful conversations, was singing songs, she would "read" stories using different voices and inflections, and was just such a sharp little cookie.
Around Christmas time, I was taking photographs of a family with an autistic child. A few weeks later, I was struck by how Karis looked and acted the exact same in front of the camera as the autistic child, but I dismissed it from my mind. Karis used to be vibrant and verbal, then her days gradually got quieter and quieter. A few months later she began running away. She began chewing on all sorts of non-food objects. Then I realized she no longer played with her baby doll, she just spent her days lying on the floor liner up her trains in rows. It was 2 am on a night when my husband was gone that it occurred to me that my child was autistic. I woke with a start, reached for my iphone, and spent the rest of the night googling autism. At 7:00 I called the clinic to see if they could squeeze us in for a referral that day. I was already showered and dressed in case they said, "We have one slot available in 5 minutes if you can get here."
At this point, we were less than a month away from moving overseas, so they put us on the fast track and we had a diagnosis of autism (moderate) within weeks. We were assured that our host country was a great place to be with behavioral therapy programs in place, so we were expecting to receive 40 hours of behavioral therapy a week, as recommended by our developmental psychologist. We found out that wasn't the case at all. What happens is that an ABA (applied behavioral analysis) therapist comes to your home about once a month and helps the parents set goals for their autistic children and gives general guidance regarding interaction. I was devastated to hear this, because it was obvious that Karis needed as much intervention as possible. Karis had continued to regress over the summer-losing what was left of her verbal skills while shunning contact and affection, plus she began flapping her hands when excited (either happy-excited or angry-excited or scared-excited).
I made a few phone calls, sent a few emails, and a new friend I had just met told me about the Sonrise program. I had a consultation on the phone with a Sonrise teacher that night. I attended a 3 day intensive training session in the UK the last weekend of August, and I came back inspired and excited to begin a program at full throttle.
Here's the gist: when your child withdraws into his/her own world, you "join" them: If they line up their toys, you line up toys. If they flap their hands, you flap your hands. When they give you the "green light" (eye contact), which may take hours or days or weeks, you introduce one new thing.
Karis was born 10 days after her due date. My water broke in the car while out running errands (Joe was driving), and he insisted we go immediately to the hospital. I wanted to go home and labor in the quiet of my bedroom, but I finally acquiesced when it was apparent he wouldn't budge. When I arrived at triage, the nurses calmly, but quickly attached an oxygen mask to my face, then began moving me from side to side while continuing to measure Karis' vitals. Apparently when my water broke, she descended on her umbilical cord and compressed it with her head-cutting off her "lifeline." Despite all of her early trauma she emerged into the outside world no worse for wear, with beautiful APGAR scores, and spent her first two years developing normally. In fact, by the time she was two, we were convinced we had a little genius on our hands. She had beautiful, meaningful conversations, was singing songs, she would "read" stories using different voices and inflections, and was just such a sharp little cookie.
Around Christmas time, I was taking photographs of a family with an autistic child. A few weeks later, I was struck by how Karis looked and acted the exact same in front of the camera as the autistic child, but I dismissed it from my mind. Karis used to be vibrant and verbal, then her days gradually got quieter and quieter. A few months later she began running away. She began chewing on all sorts of non-food objects. Then I realized she no longer played with her baby doll, she just spent her days lying on the floor liner up her trains in rows. It was 2 am on a night when my husband was gone that it occurred to me that my child was autistic. I woke with a start, reached for my iphone, and spent the rest of the night googling autism. At 7:00 I called the clinic to see if they could squeeze us in for a referral that day. I was already showered and dressed in case they said, "We have one slot available in 5 minutes if you can get here."
At this point, we were less than a month away from moving overseas, so they put us on the fast track and we had a diagnosis of autism (moderate) within weeks. We were assured that our host country was a great place to be with behavioral therapy programs in place, so we were expecting to receive 40 hours of behavioral therapy a week, as recommended by our developmental psychologist. We found out that wasn't the case at all. What happens is that an ABA (applied behavioral analysis) therapist comes to your home about once a month and helps the parents set goals for their autistic children and gives general guidance regarding interaction. I was devastated to hear this, because it was obvious that Karis needed as much intervention as possible. Karis had continued to regress over the summer-losing what was left of her verbal skills while shunning contact and affection, plus she began flapping her hands when excited (either happy-excited or angry-excited or scared-excited).
I made a few phone calls, sent a few emails, and a new friend I had just met told me about the Sonrise program. I had a consultation on the phone with a Sonrise teacher that night. I attended a 3 day intensive training session in the UK the last weekend of August, and I came back inspired and excited to begin a program at full throttle.
Here's the gist: when your child withdraws into his/her own world, you "join" them: If they line up their toys, you line up toys. If they flap their hands, you flap your hands. When they give you the "green light" (eye contact), which may take hours or days or weeks, you introduce one new thing.
First post
Welcome!
I would explain all the reasons why I don't have time to create and maintain a blog right now, but that would take just too much time, and I really don't have a lot of time. I am the owner of two now-defunct blogs that were abandoned because of lack of time, and if anything, I have even less spare time now than I have ever had in my life. HOWEVER, we are really on an amazing journey here, and I think I would really regret it in the future if I didn't keep a record of all the highs and lows and blessings and milestones and answers to prayer.
Also, since we will be relying on the goodness of volunteers for some of our work, this will be an important resource for updates and training.
Plus I have a lot of emotional stuff going on that I need to talk through. This is sort of like free therapy.
I would explain all the reasons why I don't have time to create and maintain a blog right now, but that would take just too much time, and I really don't have a lot of time. I am the owner of two now-defunct blogs that were abandoned because of lack of time, and if anything, I have even less spare time now than I have ever had in my life. HOWEVER, we are really on an amazing journey here, and I think I would really regret it in the future if I didn't keep a record of all the highs and lows and blessings and milestones and answers to prayer.
Also, since we will be relying on the goodness of volunteers for some of our work, this will be an important resource for updates and training.
Plus I have a lot of emotional stuff going on that I need to talk through. This is sort of like free therapy.
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