Gosh, I don't want to jinx it, but things are really looking up.
We've had two pretty solid weeks of calmer behavior. Fewer tantrums, and they are less intense. I have managed to cook dinner every night this week without a meltdown from Rowan. We went away for the weekend and stayed in a hotel, ate at a restaurant, visited a baby and transitioned from place to place without any major hiccups. I don't feel like I need to hand a copy of "The Out of Sync Child" to people who give me and Rowan strange or disapproving looks in public.
Besides this, the Rowan I have only gotten to glimpse at now and then is shining out in full force. He is more aware of others, and situations, and talking about them appropriately. He is telling me if something is bothering him rather than lashing out. His self confidence is shining. He is saying hi to strangers in public. He pretty much talks nonstop. Along with it, his sense of humor is exploding.
All of a sudden realize the burden all this has had on me. I can suddenly think clearly again. I am more creative at work. I can sleep. I don't feel stressed 24/7. I have more patience, and more fun. There is less screaming and more giggling in this house.
I know Rowan has cycles of ups and downs. I hope it's more that just the "up" of the cycle, and means real progress. I am hoping this hangs on for awhile. I think we're due, aren't we? We are guaranteed easier times ahead in the next few months with more sun and outdoor playtime, and soon fewer hours for me at work! I look forward to more sun and more warmth, both outside and inside our house.
Thursday, March 31, 2011
Sunday, March 27, 2011
In Between Worlds
So the verdict is out on Rowan. Not.
We've gotten the official reports from both Scottish Rite Clinic and Dr. Kidd, the consultant. It's pretty clear what each party thinks. Tahirih from Scottish Rite thinks Rowan is stuck in a pattern of behavior he developed to help him cope with his language delay. Yes, the emotional regulation stuff looks like autism. But, this is common, AND the more his language develops, the less we see it.
Dr. Kidd seems to think Rowan has behaviors that she would not rule out as "Aspergery." She thought she noticed more stimming type behaviors (sensory seeking, sensory avoiding, jumping and flapping), and thought his conversation seemed very self-centered. (Asperger's folks tend to stay on their own topics.)
Obviously, I want to agree with the first expert. I don't know if it's denial or not, but my feelings on Dr. Kidd's take are that 1.) The stimming stuff Rowan was showing could easily be part of his SPD. I jump and flap when I'm excited, don't you? (Really, I do.) 2.) Have you ever met a 3 year old whose conversation ISN'T self centered? I mean really, have you ever met a 3 year old who's been like, "Man, I LOVE Dora, how was YOUR day?"
The agreement on both parties is that it is a matter of waiting and watching. So, here we are now, living in Wait and See Land. This seemed very unsettling to me. Obviously, I want to know what is up with my kid NOW. Mostly I want to be doing everything in my power to help him be successful.
Wait, back up, choo choo. We got him all these assessments, and through that have gained amazing techniques for helping him that are working! He is seeing an OT, which he is responding to. Wait, we ARE doing everything in our power to help him be successful for now, in this moment, with what we know. So how can we do any better than that?
And of course, I just picked up "The Gift of an Ordinary Day" again, which I'd temporarily stopped reading. I seem to delve into that book whenever I need it most. I will leave it with this quote, which she writes as a mother watching her sons come of age, ready to leave the nest. I cite it now as a mother watching my sons bloom and grow just as they are, even and especially in Wait and See Land:
"...I realize [my heart] is not breaking, it's overflowing. It's not grief I feel, just love taking a new form. Love, stitching its own sturdy seam through all our souls. Love, binding together all that has been important to me and attaching it here, in this new life, in this new place, to some new sense of purpose. Love, I'm beginning to understand, is the only thing I really need to hold on to after all. On everything else: Ease up."
We've gotten the official reports from both Scottish Rite Clinic and Dr. Kidd, the consultant. It's pretty clear what each party thinks. Tahirih from Scottish Rite thinks Rowan is stuck in a pattern of behavior he developed to help him cope with his language delay. Yes, the emotional regulation stuff looks like autism. But, this is common, AND the more his language develops, the less we see it.
Dr. Kidd seems to think Rowan has behaviors that she would not rule out as "Aspergery." She thought she noticed more stimming type behaviors (sensory seeking, sensory avoiding, jumping and flapping), and thought his conversation seemed very self-centered. (Asperger's folks tend to stay on their own topics.)
Obviously, I want to agree with the first expert. I don't know if it's denial or not, but my feelings on Dr. Kidd's take are that 1.) The stimming stuff Rowan was showing could easily be part of his SPD. I jump and flap when I'm excited, don't you? (Really, I do.) 2.) Have you ever met a 3 year old whose conversation ISN'T self centered? I mean really, have you ever met a 3 year old who's been like, "Man, I LOVE Dora, how was YOUR day?"
The agreement on both parties is that it is a matter of waiting and watching. So, here we are now, living in Wait and See Land. This seemed very unsettling to me. Obviously, I want to know what is up with my kid NOW. Mostly I want to be doing everything in my power to help him be successful.
Wait, back up, choo choo. We got him all these assessments, and through that have gained amazing techniques for helping him that are working! He is seeing an OT, which he is responding to. Wait, we ARE doing everything in our power to help him be successful for now, in this moment, with what we know. So how can we do any better than that?
And of course, I just picked up "The Gift of an Ordinary Day" again, which I'd temporarily stopped reading. I seem to delve into that book whenever I need it most. I will leave it with this quote, which she writes as a mother watching her sons come of age, ready to leave the nest. I cite it now as a mother watching my sons bloom and grow just as they are, even and especially in Wait and See Land:
"...I realize [my heart] is not breaking, it's overflowing. It's not grief I feel, just love taking a new form. Love, stitching its own sturdy seam through all our souls. Love, binding together all that has been important to me and attaching it here, in this new life, in this new place, to some new sense of purpose. Love, I'm beginning to understand, is the only thing I really need to hold on to after all. On everything else: Ease up."
Tuesday, March 22, 2011
My Dog Has SPD Too!
And how do I know this?
Well, yesterday, Rowan and I were making train tracks, etc. on the sidewalk and doing various springtime play activities such as Jump in the Puddle, Stick Your Train in the Mud and Try Riding Your Trike. At one point, he looked dangerously close to thinking about going into street, so I whipped out a social story in chalk on the sidewalk. Then I made one about mittens in mud. A few minutes later, I see Rowan talking to the dog and feverishly drawing (scribbling) in front of him. The dog had kept wandering into the backyard and eating compost, so several times he'd been told not to go in the backyard. As Rowan was drawing, I overheard him say, "Murphy, you cannot go into the backyard (scribble, scribble), that will make Mommy sad! (scribble scribble) Murphy can stay in the front yard (scribble scribble), that will make Mommy and Murphy happy!" Geez, he was making a SOCIAL STORY for the DOG. I almost peed my pants. I just focused on the cuteness of it, but today at OT it was brought to my attention that it was a HUGE step for him: it means he is making the connections he needs to make. Hooray!
The dog, by the way, complied.
Well, yesterday, Rowan and I were making train tracks, etc. on the sidewalk and doing various springtime play activities such as Jump in the Puddle, Stick Your Train in the Mud and Try Riding Your Trike. At one point, he looked dangerously close to thinking about going into street, so I whipped out a social story in chalk on the sidewalk. Then I made one about mittens in mud. A few minutes later, I see Rowan talking to the dog and feverishly drawing (scribbling) in front of him. The dog had kept wandering into the backyard and eating compost, so several times he'd been told not to go in the backyard. As Rowan was drawing, I overheard him say, "Murphy, you cannot go into the backyard (scribble, scribble), that will make Mommy sad! (scribble scribble) Murphy can stay in the front yard (scribble scribble), that will make Mommy and Murphy happy!" Geez, he was making a SOCIAL STORY for the DOG. I almost peed my pants. I just focused on the cuteness of it, but today at OT it was brought to my attention that it was a HUGE step for him: it means he is making the connections he needs to make. Hooray!
The dog, by the way, complied.
What Can Happen In 8 Minutes
5:30 Dish up tacos. Kids are playing quietly and nicely in other room (or so you think).
5:31 Your firstborn comes running into the room. "Mom! Come quick!!" You sprint into the living room to find your second born has dumped an entire shaker of salt on the couch. First and second born commence eating the salt. You run for the vacuum. At this point, you are still laughing, dinner may still be hot.
5:32 After vacuuming for a few seconds, you realize your second born is missing (understandably, because he is terrified of the vacuum). You hand off vacuum to your firstborn and run upstairs. Dinner now warm. You are still slightly giggling, but concerned.
5:33 Walk into your bedroom to find second born has opened the jar of your expensive face cream (this happened once before around Christmas...WHY didn't I put it out of reach?!!) About 1/4 is left in the jar, the rest is on the floor or on the child's arms/hands. Now anger has set in. Dinner is colder yet.
5:34 Bathroom. Washing slippery mess off child, who is screaming. Scold and say cross words. Leave child with towel to dry hands. Go clean up floor. Dinner?
5:35 Hear something hitting floor. Go into firstborn's bedroom to find that second born has opened two dresser drawers and has emptied both. He is now flinging the contents across the room, most likely because you scolded him. Hear actual expletives come out of your mouth directed at child. Child yells "Don't yell!!" (Hey...he used his words!) Dinner, what dinner? Dog probably stole it off the counter by now.
5:36 Take calming breaths. Remind yourself of the silver lining: the vacuum is still on, so at least the firstborn didn't hear the swear words! Pray that the second born doesn't repeat them in public or at a family gathering. Remember about dinner.
5:37 Commence downstairs. Turn off and put away vacuum. Convince second born that vacuum is done. Pull self together.
5:38 Cold tacos. BIG glass of wine.
5:31 Your firstborn comes running into the room. "Mom! Come quick!!" You sprint into the living room to find your second born has dumped an entire shaker of salt on the couch. First and second born commence eating the salt. You run for the vacuum. At this point, you are still laughing, dinner may still be hot.
5:32 After vacuuming for a few seconds, you realize your second born is missing (understandably, because he is terrified of the vacuum). You hand off vacuum to your firstborn and run upstairs. Dinner now warm. You are still slightly giggling, but concerned.
5:33 Walk into your bedroom to find second born has opened the jar of your expensive face cream (this happened once before around Christmas...WHY didn't I put it out of reach?!!) About 1/4 is left in the jar, the rest is on the floor or on the child's arms/hands. Now anger has set in. Dinner is colder yet.
5:34 Bathroom. Washing slippery mess off child, who is screaming. Scold and say cross words. Leave child with towel to dry hands. Go clean up floor. Dinner?
5:35 Hear something hitting floor. Go into firstborn's bedroom to find that second born has opened two dresser drawers and has emptied both. He is now flinging the contents across the room, most likely because you scolded him. Hear actual expletives come out of your mouth directed at child. Child yells "Don't yell!!" (Hey...he used his words!) Dinner, what dinner? Dog probably stole it off the counter by now.
5:36 Take calming breaths. Remind yourself of the silver lining: the vacuum is still on, so at least the firstborn didn't hear the swear words! Pray that the second born doesn't repeat them in public or at a family gathering. Remember about dinner.
5:37 Commence downstairs. Turn off and put away vacuum. Convince second born that vacuum is done. Pull self together.
5:38 Cold tacos. BIG glass of wine.
Sunday, March 20, 2011
PIZZA!
So far a "thumbs up" on pizza and ice cream.
"Thumbs down" on yogurt, string cheese, regular milk. We will keep trying!
Sap
This has been a weekend of bliss so far, a great ending to a doable week. Rowan's tantrums have been fewer in number and less intense. When he does have one, he is calming more quickly. I don't know if I should chalk it up to the techniques we are using, or just a natural "up" in the cycles he seems to have.
Weekends usually are terrible. Hell, if I might say. The lack of structure seems to throw Rowan off kilter. We are all walking on eggshells, diffusing tantrums constantly. This is especially bad if we don't get out of the house.
Yesterday we drove out to our neighbors' farm by Wright, MN to the sugarbush and helped collect sap and watched a maple syrup boil down. We had a blast, which we do every year. It sufficiently entertained everyone, we got to see some good friends and make some new ones, and the kids (and dog) slept GREAT last night.
Sticky goodness.
Weekends usually are terrible. Hell, if I might say. The lack of structure seems to throw Rowan off kilter. We are all walking on eggshells, diffusing tantrums constantly. This is especially bad if we don't get out of the house.
Yesterday we drove out to our neighbors' farm by Wright, MN to the sugarbush and helped collect sap and watched a maple syrup boil down. We had a blast, which we do every year. It sufficiently entertained everyone, we got to see some good friends and make some new ones, and the kids (and dog) slept GREAT last night.
Hiking in, Rowan wouldn't ride in the sled. His train, Percy, however, is getting a ride.
Rowan stirring sap.
Aidan and his buddy, Cedar.
Aidan is known as the sapsucker. He likes it right from the source. No need for a boil down for him.
Rowan helping Andrew collect sap.
Collecting sap.
Rowan's favorite mud puddle at camp.
Dan stirring sap.
Straining it off while the kids look on.
The kids go for the big syrup vat. Rowan, Ahna, Allison, Mia, Cedar, Aidan.
Rowan didn't quite understand that he was supposed to eat it. He just thought it was something sticky to play with. Here he is watching the master (Ahna) at work. He quickly figured out what to do.
Sticky goodness.
Wednesday, March 16, 2011
Social Story Rules
Here are some of our house rules in the form of simple social stories. I wrote them on the fridge in dry erase marker. (Aidan is fixing them.) Rowan and I are reviewing them here. Sorry about the sideways video. Apparently, I don't know how to use a camera. Just tilt your head.
Less...I mean, More on My Plate
Every kid comes with their own set of gifts and challenges. With Aidan the challenge was the food allergies. Although he's been outgrowing them over the years, at one point he was allergic to peanuts, eggs, soy, dairy, corn, wheat, gluten, peas, fish and tree nuts. I often weigh what we are going through with Rowan against the allergy experience for a little perspective. Indeed, there are months of Aidan's itchy little babyhood that I don't even remember. Just a blur of sleepless nights, stress and a similar feeling of "How will I manage this?" I remember feeling helpless and coming up against a huge lack of resources. Strangely familiar.
Nowadays you can't throw an epi-pen without hitting a kid with a peanut allergy. We kind of felt like we were at the beginning of the wave of the childhood food allergy epidemic. I kind of feel like we might be there with sensory processing disorder too. My kids are such groundbreakers, aren't they? Makes a Mom proud.
Anyway, I digress. Today we were given the wonderful and amazing news that Aidan seems to have outgrown his dairy allergy. That leaves us with only peanuts and cashews to avoid. Today Aidan underwent a food challenge, which basically involves sitting in the allergist's office for hours while trying a tiny bits of the offending food, with 20 minutes in between each taste, increasing the amount each time. Aidan did great and seems to have tolerated it well. He drank about 4 ounces of milk with no reaction!
Needless to say, we are so excited! No more soy, rice, almond, or hemp milk. No more fake ice cream, butter, or cheese. No more altering recipes, reading labels. Going out to eat will be easier and much less scary. I won't have to stash special treats for Aidan at school for birthday parties. It will be like a whole new world! Nonnie already wants to buy him his first ice cream cone at Frosty's in Longville. I can't wait to go to Sammy's Pizza or the Portland Malt Shop! It will be so nice to have one less thing to worry about...and more to offer Aidan.
The news didn't really sink in with him until we got home today. I was listing off a bunch of things he could now have. The thing that really got him was eating french toast with the other kids for hot lunch at school. His little light bulb went off, and he started jumping around and whooping with excitement.
With this news, I received so much of what I needed: lower grocery bill, less food stress, and just the right kind of perspective. It is nice to look back at that stress from right after Aidan's tests came back positive, now breathing with a big sigh of relief. Whew! We made it.
Nowadays you can't throw an epi-pen without hitting a kid with a peanut allergy. We kind of felt like we were at the beginning of the wave of the childhood food allergy epidemic. I kind of feel like we might be there with sensory processing disorder too. My kids are such groundbreakers, aren't they? Makes a Mom proud.
Anyway, I digress. Today we were given the wonderful and amazing news that Aidan seems to have outgrown his dairy allergy. That leaves us with only peanuts and cashews to avoid. Today Aidan underwent a food challenge, which basically involves sitting in the allergist's office for hours while trying a tiny bits of the offending food, with 20 minutes in between each taste, increasing the amount each time. Aidan did great and seems to have tolerated it well. He drank about 4 ounces of milk with no reaction!
Needless to say, we are so excited! No more soy, rice, almond, or hemp milk. No more fake ice cream, butter, or cheese. No more altering recipes, reading labels. Going out to eat will be easier and much less scary. I won't have to stash special treats for Aidan at school for birthday parties. It will be like a whole new world! Nonnie already wants to buy him his first ice cream cone at Frosty's in Longville. I can't wait to go to Sammy's Pizza or the Portland Malt Shop! It will be so nice to have one less thing to worry about...and more to offer Aidan.
The news didn't really sink in with him until we got home today. I was listing off a bunch of things he could now have. The thing that really got him was eating french toast with the other kids for hot lunch at school. His little light bulb went off, and he started jumping around and whooping with excitement.
With this news, I received so much of what I needed: lower grocery bill, less food stress, and just the right kind of perspective. It is nice to look back at that stress from right after Aidan's tests came back positive, now breathing with a big sigh of relief. Whew! We made it.
Sunday, March 13, 2011
Overheard #2, parts a.) and b.)
Part a.) - Breakfast for Dinner
Family: God is Great, God is Good, Let us thank Him for our food. Amen
Dan: I am thankful that Lindi, Azalea and baby Ave came over to play with us today.
Aidan: I am thankful for the whole fun day!
Me: I am thankful for chocolate chip pancakes and my guitar spatula. (Aidan and I were listening to Led Zeppelin, Houses of the Holy, while making pancakes. And yes, I have a guitar shaped spatula. Today was the first day I realized its full potential. Who needs Guitar Hero?)
Dan: Rowan, what are you thankful for?
Rowan: I WANT MORE BACON!
Dan: Please?
Rowan: More bacon, please?
(Dan gives him bacon.)
Me: Rowan, what are you thankful for?
Rowan: Bacon.
Part b.) - Aidan is helpful
Me: Aidan, how does it feel that you were so helpful tonight?
Aidan: Hmm.....proud.
M: I just want to tell you, that no matter what, I love you. But when you are so extra helpful to me like you were tonight, it makes my heart feel so warm and happy and full of love for you. You really helped me today, and made my day so much easier.
A: (pauses....) My throat feels like it's going to cry.
Family: God is Great, God is Good, Let us thank Him for our food. Amen
Dan: I am thankful that Lindi, Azalea and baby Ave came over to play with us today.
Aidan: I am thankful for the whole fun day!
Me: I am thankful for chocolate chip pancakes and my guitar spatula. (Aidan and I were listening to Led Zeppelin, Houses of the Holy, while making pancakes. And yes, I have a guitar shaped spatula. Today was the first day I realized its full potential. Who needs Guitar Hero?)
Dan: Rowan, what are you thankful for?
Rowan: I WANT MORE BACON!
Dan: Please?
Rowan: More bacon, please?
(Dan gives him bacon.)
Me: Rowan, what are you thankful for?
Rowan: Bacon.
Part b.) - Aidan is helpful
Me: Aidan, how does it feel that you were so helpful tonight?
Aidan: Hmm.....proud.
M: I just want to tell you, that no matter what, I love you. But when you are so extra helpful to me like you were tonight, it makes my heart feel so warm and happy and full of love for you. You really helped me today, and made my day so much easier.
A: (pauses....) My throat feels like it's going to cry.
Turning Around
I've taken too many of these walks.
I step out into the night air, having slammed the door so hard I heard something fall off the wall. For a second I don't care, then I feel a huge guilty sob welling up in my chest. Guilt for having lost it again. Guilt for yelling. Guilt for Aidan having to be in the middle of all this chaos. Guilt for not being able to help Rowan. Guilt for leaving Dan with a screaming child, who can't seem to go two seconds this evening without biting, hitting, scratching, screaming, or whipping something. We tried the visual schedule, the squish game, the social stories. We Skyped Nonnie, hoping she could cheer him up. Right now I am cursing Dr. Kidd and Tahirih for their stupid strategies that don't do crap. I feel completely alone. My heart is breaking for the loss of the mother that I thought I was. I have stepped into a place of complete despair. It is a place I am starting to spend too much time in.
I've had a couple of people comment about this blog, saying I have such a great attitude, and am handling things with such grace. I've got news people, I am human. I feel rage. I think about continuing walking and not coming back. Maybe making a stop at Miller Dwan and checking myself in.
I know better. I know that when I reach that place of hot anger, I have found the place where Rowan resides during those tough times. A place of complete loss of control, where emotion rules over reason. What I can't figure out is, if it is my job to help Rowan get out of that place, who is going to help me?
At some point, even though I don't feel ready, I turn around. As a return to my house, I see the disco ball spinning in my living room. My husband has declared a dance party. I walk in to find smiles and happy giggling. I don't feel much like dancing. I go up to my room and cry some more, disappointed in myself, but happy tears as well for that lovely man downstairs who solved the problem in such a simple, awesome way. I am so happy we don't have to weather this alone. Dan and I dance this amazing dance, of knowing when the other has had too much, reminding them to step away when they need to. (I was told to go on the walk.) It is stressful though, and I admit there is a lot of tension in this house. The days we've both reached the boiling point are the worst.
This morning he acknowledged that we need to be better about recognizing communicating those moments of "I've had enough," and respecting that need. Hopefully his moments and my moments offset each other. Through my own practices of relaxing, breathing, and putting myself in a time out (going for a walk), Rowan will see healthy ways of dealing with anger.
Supposedly, Rowan has "goat trails" between the center of his brain that has strong emotional reactions and the part of his brain that makes judgements. (According to Tahirih, who really does rock. And Dr. Kidd too, who gave us great ideas.) It takes a while to build a superhighway where a goat trail is now. Patience and perseverance will help. A dance party once in a while might help too. I have a right to feel angry once in a while, I'll try to forgive myself for that. And I know that even though I am not always the mom I want to be, perhaps after getting through this I will be a better person. And so will Rowan.
I step out into the night air, having slammed the door so hard I heard something fall off the wall. For a second I don't care, then I feel a huge guilty sob welling up in my chest. Guilt for having lost it again. Guilt for yelling. Guilt for Aidan having to be in the middle of all this chaos. Guilt for not being able to help Rowan. Guilt for leaving Dan with a screaming child, who can't seem to go two seconds this evening without biting, hitting, scratching, screaming, or whipping something. We tried the visual schedule, the squish game, the social stories. We Skyped Nonnie, hoping she could cheer him up. Right now I am cursing Dr. Kidd and Tahirih for their stupid strategies that don't do crap. I feel completely alone. My heart is breaking for the loss of the mother that I thought I was. I have stepped into a place of complete despair. It is a place I am starting to spend too much time in.
I've had a couple of people comment about this blog, saying I have such a great attitude, and am handling things with such grace. I've got news people, I am human. I feel rage. I think about continuing walking and not coming back. Maybe making a stop at Miller Dwan and checking myself in.
I know better. I know that when I reach that place of hot anger, I have found the place where Rowan resides during those tough times. A place of complete loss of control, where emotion rules over reason. What I can't figure out is, if it is my job to help Rowan get out of that place, who is going to help me?
At some point, even though I don't feel ready, I turn around. As a return to my house, I see the disco ball spinning in my living room. My husband has declared a dance party. I walk in to find smiles and happy giggling. I don't feel much like dancing. I go up to my room and cry some more, disappointed in myself, but happy tears as well for that lovely man downstairs who solved the problem in such a simple, awesome way. I am so happy we don't have to weather this alone. Dan and I dance this amazing dance, of knowing when the other has had too much, reminding them to step away when they need to. (I was told to go on the walk.) It is stressful though, and I admit there is a lot of tension in this house. The days we've both reached the boiling point are the worst.
This morning he acknowledged that we need to be better about recognizing communicating those moments of "I've had enough," and respecting that need. Hopefully his moments and my moments offset each other. Through my own practices of relaxing, breathing, and putting myself in a time out (going for a walk), Rowan will see healthy ways of dealing with anger.
Supposedly, Rowan has "goat trails" between the center of his brain that has strong emotional reactions and the part of his brain that makes judgements. (According to Tahirih, who really does rock. And Dr. Kidd too, who gave us great ideas.) It takes a while to build a superhighway where a goat trail is now. Patience and perseverance will help. A dance party once in a while might help too. I have a right to feel angry once in a while, I'll try to forgive myself for that. And I know that even though I am not always the mom I want to be, perhaps after getting through this I will be a better person. And so will Rowan.
Friday, March 11, 2011
Overheard #1
Rowan: You love horses.
Me: No, not really.
R: Yes, you do.
M: No, really I don't. I love bunnies though.
R: Nee Nee loves horses.
M: Sure. Sounds good.
R: Daddy loves deers.
M: Yes, he does. (Shooting and eating them, I think.)
R: I love turtles.
M: You do?
R: YESSSSSSS!
M: Would you like to have a pet turtle someday?
R: YESSSSSSS!
M: What would you name your turtle, if you had one?
R: (pause) (I am wondering if he understood the question.) Mister WATERMELON!
Me: No, not really.
R: Yes, you do.
M: No, really I don't. I love bunnies though.
R: Nee Nee loves horses.
M: Sure. Sounds good.
R: Daddy loves deers.
M: Yes, he does. (Shooting and eating them, I think.)
R: I love turtles.
M: You do?
R: YESSSSSSS!
M: Would you like to have a pet turtle someday?
R: YESSSSSSS!
M: What would you name your turtle, if you had one?
R: (pause) (I am wondering if he understood the question.) Mister WATERMELON!
Social Story Artist For Hire
This is my first year working as a special education paraprofessional. In many ways it's easier than teaching - fewer hours, less planning, none of that take it home with you kind of thing. In some ways, much harder. Less go, go, go (which I LOVE and miss) and more measured patience.
One thing I learned about this year that has been very useful to me is writing (drawing) social stories. Social stories are a visual way of teaching appropriate behavior to people who are on the autism spectrum. They can be very simple, or pretty elaborate. The ones I write at school for the little dude I work with are like little comic strips. I have gotten quite good at drawing them and wording them so steps are broken down in simple, concrete terms. I've written one called "My Friend Needs to Fix Her Pants" (a classmate had a low-rise pants situation going on, apparently very upsetting....), another called "My Classmate is Bothering Me" (how to ask nicely for someone to stop,) and I've even written one called "What Do I Do With These Boogers?" (Rather than the harvest-and-snack situation we had going on.) Coworkers ask me to draw them for their on-the-spectrum kids all the time.
Three weeks ago, while talking to the OT about Rowan and his tough behavior, she asked, "Have you ever heard of social stories?" I just laughed. Turns out, a social story in the form of a picture schedule, to help Rowan with bedtime/morning routines, was her prescription. I was skeptical. How could this thing I do every day, staring me right in the face, be the help we need? Does that make Rowan autistic if he needs the autism supports? I took the idea home, I tried it. It worked. A bedtime with no tears or huge fits. Dan walking out of the house with Rowan in the morning rather than dragging him out kicking and screaming.
I mused about this later with Tahirih from my favorite Scottish Rite Clinic. Stating that I thought the situation between work and home was ironic, she reworded it for me. "No," she said, "I'd say the universe has been pretty generous to you." And she is right. I would have been several steps behind if not for what I have had to learn in my job this year. I've griped a lot to friends about not being able to teach art this year. Once again, what do I know? God always gives you exactly what you need. Tahirih also reassured me, just because he needs the autism supports doesn't give him that label. He is neurologically similar enough, that this just works for him.
The second part of this story has to do with today. While I have been using the visual schedules and they have been helpful, that is the extent to which I have used them. We are still struggling with meltdowns, tantrums and explosive/violent behavior. Enter Dr. Kidd, the behavioral consultant who came to our house today. We had a nice visit. Rowan engaged with her right away and was playing and flirting with her. We discussed possible triggers behind his meltdowns. She was feverishly jotting down notes while somehow still managing to stay focused on us. She suggested an interesting tactic for Rowan's tantrums. Usually, when he has one, we name his emotion "Rowan is MAD!" and then pretty much restrain him until he's calm enough to talk about it. She recommended going back to drawing social stories. Modeling an example for me, she looked for an opportunity for me to say no to him so we could try it. Rowan wanted lotion. I said no. He started flinging things and hitting me. She handed me her clipboard. I drew Rowan's mad face "Rowan is MAD." (He stops screaming.) I drew the lotion bottle. "Rowan wants lotion and mommy says no!" (He is interested in the pictures.) I crossed out his mad face and the lotion. "No lotion now." (I can feel his body calming.) I drew a train. "Rowan can play trains now." I drew a happy face. "That will make Rowan happy." Rowan stood up and went downstairs to his trains. I looked at Dr. Kidd in disbelief. She grinned.
So, it looks like I'll be in my social story practice for a while. A notebook in every room, in the car, in my purse. Eventually, his little brain will start making the connections and we should need them less. (I hope.) I think I have drawn about 15 so far on this unstructured day. Dan will also need to practice his drawing skills.
Other things I got from our visit today: look into a 504 plan for getting Rowan accommodations at preschool next year despite not qualifying for special ed services. Don't rule out autism, particularly Asperger's. (I don't like this one...but I can't ignore it either.) Rowan's language is AMAZING (she kept saying that!) Play deep pressure "squish" games with Rowan. Get a mini-trampoline. More resources being sent my way.
I have, for a while, been a little concerned about work being "too close to home." With the addition of more of these supports, it's getting under my skin a little. And I know it's going to get harder before it gets easier. I've just got to keep on keepin' on. And my next post will be funny. Promise.
Wednesday, March 9, 2011
Judgement Day
Well, today was the big day. The day where you go into the room with all the special education people and you sit around a table and they tell you, area by area, all the things that are wrong with your kid.
I tried to have no expectations for this meeting. I didn't know how to. I know Rowan didn't want to perform for the test-givers, so in that respect my expectation was low. But then I know he has been talking my ear off at home, making friends, showing great imagination. So on that end of it, my expectation was high.
Paragraph by paragraph I listen to people tell me their expert opinion on who my child is. These folks have spent 2 hours or less with Rowan, and here sits his future on that short amount of time. I hear things like wouldn't participate, hiding under table, good sense of humor, copied block pattern, counted to twelve, not independent on self help tasks, wouldn't say his name, above average gross motor skills, no hand preference, language in average range.....it went on and on. I kept hearing the words "average range" more than I thought I would. Despite my qualms about how some of the assessments were done, they seemed pretty spot on. What it really came down to was the last page (which I should have known enough to skip to at the beginning of the meeting,) on which the box was checked: does not qualify for special education services at this time. I was shocked. Okay....good news, but now what? Who is going to help us? Where will we get strategies? This whole SPD thing, no one seems to know about it, no one seems to have had it, no one seems to be able to give us TOOLS to deal with it. I guess I'm glad my kid is not tied down to an IEP, but where's the help, man?
That supposed superhero is flying in to our house on Friday. Once again, the amazing and wonderful Scottish Rite Clinic is coming through for us. They are sending a behavioral specialist to our house on Friday, on their dime. She has a good reputation, coincidentally goes to our church, and has worked with students at the school I go to. We had a fantastic conversation on the phone today. How does one even begin to express gratitude for such a thing?
So, one door closes, another opens, I guess. I look forward to Friday.
Tonight, by the way, was the best night Rowan has had in months. No tantrums or meltdowns. No violent outbursts. Just a chatty, cute, happy goofball. He is currently running around naked, chattering constantly about his friends, toys...a constant stream of excited descriptions. Maybe he, we all, just needed someone to tell us he might be destined for average, after all. I never thought I'd like to hear that word in describing my child. (Aren't we all shooting for above average?) But I'll take it.
I tried to have no expectations for this meeting. I didn't know how to. I know Rowan didn't want to perform for the test-givers, so in that respect my expectation was low. But then I know he has been talking my ear off at home, making friends, showing great imagination. So on that end of it, my expectation was high.
Paragraph by paragraph I listen to people tell me their expert opinion on who my child is. These folks have spent 2 hours or less with Rowan, and here sits his future on that short amount of time. I hear things like wouldn't participate, hiding under table, good sense of humor, copied block pattern, counted to twelve, not independent on self help tasks, wouldn't say his name, above average gross motor skills, no hand preference, language in average range.....it went on and on. I kept hearing the words "average range" more than I thought I would. Despite my qualms about how some of the assessments were done, they seemed pretty spot on. What it really came down to was the last page (which I should have known enough to skip to at the beginning of the meeting,) on which the box was checked: does not qualify for special education services at this time. I was shocked. Okay....good news, but now what? Who is going to help us? Where will we get strategies? This whole SPD thing, no one seems to know about it, no one seems to have had it, no one seems to be able to give us TOOLS to deal with it. I guess I'm glad my kid is not tied down to an IEP, but where's the help, man?
That supposed superhero is flying in to our house on Friday. Once again, the amazing and wonderful Scottish Rite Clinic is coming through for us. They are sending a behavioral specialist to our house on Friday, on their dime. She has a good reputation, coincidentally goes to our church, and has worked with students at the school I go to. We had a fantastic conversation on the phone today. How does one even begin to express gratitude for such a thing?
So, one door closes, another opens, I guess. I look forward to Friday.
Tonight, by the way, was the best night Rowan has had in months. No tantrums or meltdowns. No violent outbursts. Just a chatty, cute, happy goofball. He is currently running around naked, chattering constantly about his friends, toys...a constant stream of excited descriptions. Maybe he, we all, just needed someone to tell us he might be destined for average, after all. I never thought I'd like to hear that word in describing my child. (Aren't we all shooting for above average?) But I'll take it.
Sunday, March 6, 2011
SPD? That sounds made up...
...and that is what Dan and I thought when Rowan got his diagnosis last year. But we soon delved into books and resources, reading accounts written by parents and providers who could have easily been writing about our son. Here is an overview of SPD from spdfoundation.net:
"Sensory processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration."
Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.
One study (Ahn, Miller, Milberger, McIntosh, 2004) shows that at least 1 in 20 children’s daily lives is affected by SPD. Another research study by the Sensory Processing Disorder Scientific Work Group (Ben-Sasson, Carter, Briggs-Gowen, 2009) suggests that 1 in every 6 children experiences sensory symptoms that may be significant enough to affect aspects of everyday life functions. Symptoms of Sensory Processing Disorder, like those of most disorders, occur within a broad spectrum of severity. While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life."
This disorder can affect different systems of the body. With Rowan it's mostly auditory. Certain sounds will send him into a violent and explosive tantrum. The other main system affecting Rowan is his vestibular system. My definition of that is your bodily awareness in relation to gravity. So he is fearful of heights, descending stairs, sitting on counters, etc. Recently we found out that an out of whack vestibular system also effects emotional regulation. This is where we are stuck now. Rowan lacks coping skills when upset by something, whether it's a toy not working the way he wants or being told no. His brain does not reason with itself of how to solve the problem. Rather, it immediately goes into fight or flight mode, resulting in hitting, throwing objects, kicking, scratching, biting. So in essence, I look like an inept parent in public, which is fun.
Another thing we dealt with, which Rowan is working through quickly is a language delay. He finally is catching up to where he should be. I try to imagine how it must have been for him, his world so disorganized, bombarded with crazy sensory signals, and not being able to tell anyone about it. Man, that would piss me off too. He still can get set off by things, but will cover his ears, or say "too loud.". This is a huge step, compared to how he used to be.
SPD is related to autism, but not on the autism spectrum. My understanding is that most people who have autism have some form of SPD. But you can have SPD without having autism. Rowan does have behaviors that "look" autistic: the speech delay, withdrawal, covering his ears. For a while he was fixated on certain toys and repetitive play. As his language has developed, that went away. Recently we had him assessed, looking for signs of autism, by the Scottish Rite Clinic in Duluth. They do not think he shows the classic signs...basically too flexible in his thinking and outside of his own world enough. We are pursuing some other help to assist us with Rowan's behaviors and tantrums. He is also in the process of being assessed by Duluth Public Schools so we can get services from them. We also see an occupational therapist once a week.
Living with Rowan is having to reinvent the wheel every moment. It is having to be constantly creative and engaging. Everything I thought I knew about parenting? Bogus. But...as these things usually go, it comes with some perks. Rowan has an AMAZING imagination. At any minute we can be tigers in the jungle, trains on a track, snowplows, feeding our horse (dog) on a farm. No one can hug or cuddle like Rowan.He just melts into you. He is SO TUNED into sound, he can imitate anything he hears. His brother is a great drummer, but Rowan beatboxes. He doesn't need a drum kit, he sounds like one. He is extremely visual, and amazingly passionate.
The next few weeks will bring more assessments are more information. Perhaps the diagnosis will change, perhaps he will get more services, perhaps not. Here is what I know: I already know what I love about Rowan. Any label given to him is not going to change that. His SPD is going to make me a better mother, teacher, person. Rowdy Buddhist master, indeed. He keeps me real, and in the here and now. And I love him for that.
"Sensory processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration."
Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.
One study (Ahn, Miller, Milberger, McIntosh, 2004) shows that at least 1 in 20 children’s daily lives is affected by SPD. Another research study by the Sensory Processing Disorder Scientific Work Group (Ben-Sasson, Carter, Briggs-Gowen, 2009) suggests that 1 in every 6 children experiences sensory symptoms that may be significant enough to affect aspects of everyday life functions. Symptoms of Sensory Processing Disorder, like those of most disorders, occur within a broad spectrum of severity. While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life."
This disorder can affect different systems of the body. With Rowan it's mostly auditory. Certain sounds will send him into a violent and explosive tantrum. The other main system affecting Rowan is his vestibular system. My definition of that is your bodily awareness in relation to gravity. So he is fearful of heights, descending stairs, sitting on counters, etc. Recently we found out that an out of whack vestibular system also effects emotional regulation. This is where we are stuck now. Rowan lacks coping skills when upset by something, whether it's a toy not working the way he wants or being told no. His brain does not reason with itself of how to solve the problem. Rather, it immediately goes into fight or flight mode, resulting in hitting, throwing objects, kicking, scratching, biting. So in essence, I look like an inept parent in public, which is fun.
Another thing we dealt with, which Rowan is working through quickly is a language delay. He finally is catching up to where he should be. I try to imagine how it must have been for him, his world so disorganized, bombarded with crazy sensory signals, and not being able to tell anyone about it. Man, that would piss me off too. He still can get set off by things, but will cover his ears, or say "too loud.". This is a huge step, compared to how he used to be.
SPD is related to autism, but not on the autism spectrum. My understanding is that most people who have autism have some form of SPD. But you can have SPD without having autism. Rowan does have behaviors that "look" autistic: the speech delay, withdrawal, covering his ears. For a while he was fixated on certain toys and repetitive play. As his language has developed, that went away. Recently we had him assessed, looking for signs of autism, by the Scottish Rite Clinic in Duluth. They do not think he shows the classic signs...basically too flexible in his thinking and outside of his own world enough. We are pursuing some other help to assist us with Rowan's behaviors and tantrums. He is also in the process of being assessed by Duluth Public Schools so we can get services from them. We also see an occupational therapist once a week.
Living with Rowan is having to reinvent the wheel every moment. It is having to be constantly creative and engaging. Everything I thought I knew about parenting? Bogus. But...as these things usually go, it comes with some perks. Rowan has an AMAZING imagination. At any minute we can be tigers in the jungle, trains on a track, snowplows, feeding our horse (dog) on a farm. No one can hug or cuddle like Rowan.He just melts into you. He is SO TUNED into sound, he can imitate anything he hears. His brother is a great drummer, but Rowan beatboxes. He doesn't need a drum kit, he sounds like one. He is extremely visual, and amazingly passionate.
The next few weeks will bring more assessments are more information. Perhaps the diagnosis will change, perhaps he will get more services, perhaps not. Here is what I know: I already know what I love about Rowan. Any label given to him is not going to change that. His SPD is going to make me a better mother, teacher, person. Rowdy Buddhist master, indeed. He keeps me real, and in the here and now. And I love him for that.
Yep, I started a new blog
Inspired by a book I'm reading and inspired by a friend, I decided to start blogging again. Plus a couple people on facebook told me they think I'm funny and they like my writing. And I have more to say than 420 characters will allow me most of the time.
My old blog can be viewed at www.aidanandrowan.blogspot.com. I started a different one because 1.) Gmail is dumb and it won't let me in for some reason, and 2.) My parenting journey has taking some interesting turns.
You know how sometimes you pick up a book and start reading it at the right time? The Gift of an Ordinary Day by Katrina Kenison is that book for me right now. Amidst the whirlwind storm of juggling kids, jobs, food allergies, cold and flu season and mainly Rowan's sensory processing disorder, this book has reminded me the most helpful thing I can do is be present. I am slowing down. I am becoming more accepting of what has been handed to me. I am taking more time to breathe, and play.
Up to this point, I've been fighting against Rowan's diagnosis last year of sensory processing disorder. I was forgetting to live with it and learn from it. A quote from Kenison's book sums up my new attitude, and named this new blog: "Our children drop into our neat, tightly governed lives like small rowdy Buddhist masters, each of them sent to teach us the hard lessons we most need to learn." (Credited to Jon Kabat-Zinn.)
So, I'm navigating the turns with a new resolve to learn and be present. Writing will help me stay accountable to that. And if I can share it, why not?
I think much of this blog will focus on the journey with SPD, peppered with the fun that Aidan and Rowan bring to my life every day. I hope you enjoy reading it.
Subscribe to:
Posts (Atom)