Friday
On Friday morning - R wakes up with hot forehead and flushed cheeks .
I call to let his teacher know that he will not be coming and she says that 50% of the school is out
By evening he is simply pathetic - weak and wan - and wanting to just lie in my lap and be petted
When we ask if he wants to go to the cabin - he answers pitifully "stay home "
But post Tylenol he is bouncing and begging to go to the "New Cabin New house"
So we pack and leave
We know the reason why he wants to go to the cabin is that is where the Wii is and he has suddenly rediscovered his passion for the Wii ( through videos in the youtube )
We snuggle in bed and watch the Inspector Lynley Series ( we borrow the DVD's from our library - for free ) - while R nestles with his arms around my waist
Saturday
DH and I are both under the weather .. We loll around all morning too listless to do anything -
By afternoon we summon up enough energy to go to town .
R asks to eat at Mc Donald's
We go through the drive through pay for the nuggets s but forget to take the chicken - its so funny that R is the only person who notices and as soon as we drive away - he squeaks from the back seat " chicken chicken"
He he he - the person with the poorest executive functioning skills - has the best
DH and I smuggle his Mc Nuggets into Chick-Fil a so we can eat their amazing Spicy Chicken Burger
We continue with our lazy day and watch two movies
The Kids are all right
pretty good. Story of a gay couple ( Julianne Moore and Annette Benning ) who have two children through a sperm bank) . Kids grow up and contact the donor and he comes into their lives
Going the distance
nice romantic comedy with DH's favorite Drew Barrymore
Sunday
If Saturday is a lovely day of sloth
Sunday is a day of chores
DH, I and R take a long walk around the trails of the cabin .
R has some confusion regarding the purpose of a walk and thinks he should be carried - or swung between us and we do this from time to time
Plus every few minutes - he must stop and look down the valley
We go home and while R has therapy - DH and I cook for the week
At 6 in the evening - we discover with a shock that his HW to collect a 100 random things for school is due tomorrow - and we ask his ABA therapist to help him with this
R catches on really fast and has a lot of fun doing his homework .it makes me think of something I read on Dr Boucher's blog recently - that accomplishment is the only real source of self esteem
Monday
In therapy, R is reading a book called " Mr Noisy"
He has a lot of difficulty dealing with the loud sounds and his teacher has suggested reading this book with him to help him cope
When his therapist asks him how he feels when people are noisy and shows him the options
his hand hovers for a minute over the word "mad" but then he moves quickly over to "scared"
and he says " I feel scared"
( this is another discovery she made - R can answer most questions when given multiple choice options - but not when asked open-ended question )
I am so proud of him that he can identify his feelings correctly
Tuesday
I read some of the comments on my Hopeful Parents post with dismay.
Many have written very nice comments
But a few misunderstand my point and either assume I mean they should "love autism" ( not my point at all )
Or that I dont have a really autistic child and am dismissing the pain of parents of kids with severe autism ( not my intent either )
DH is such a comfort and so are your and my other friends comments.
Thank u so much
To cheer myself up I indulge in some dreadful sin as we go to TGIF for our date lunch and share the brownie obsession with DH
But OMG its sooo good
Wednesday
R and I have a lovely evening
My "30 minute Floortime- then let yourself off the hook" - idea continues to be pure genius
Its really easy to find opportunity to floortime anywhere
For instance while on our indoor swing
I take up various stufffed animals and sing
"If you are Diego and you know it ... shout back pack"
Then I hold up another toy and let R fill the blanks
"If you are ------ ( R fills in "Baby Jaguar" ) and you know it , ..... ( r fills in - "clap your paws")
he has difficulty falling asleep today .
Finally I give up and ask DH to lie with him
DH tries for a while but is annoyed becasue "R keeps mewling for mother"
And tells him that he must sleep by himself
I come back an hour later and find R fast asleep but in the bathroom .
Where he has done his sleep routine of reading the Teddy Bear counting book ( which I must read in Spanish- atleast all the numbers - this is a great trial for me -)
He looks so sweet and small and when I pick him up and put him in his bed he wraps his arms tightly around my neck and so I lie next to him "for a while"
But then wake up when the alarm goes up feeling cramped and stiff in R's tiny bed- with DH boasting about the lovely sleep he had all alone!
Thursday evening
DH takes R to muscial gymnastics -
And I take a long walk and also fry Samosas ( like Peirogies ) to ingratiate myself with DH .
R has had school followed by Speech therapy, Play therapy and then Gymnastics so we simply roll around on the floor for literal Floortime
R is mad for DH's white mac
He is always asking him "please can I have a Papa's white computer please"( we have taken the Nancy Kauffman idea of giving the child certain scripts and this really works great )
Nowadays DH makes him answer 3 questions before he gets the white computer - a great strategy
I move around the house clearing up and R moves with me precariously balancing the heavy white laptop - as I pick up and move every 5 minutes - he needs to move every few minutes to stay close to me
How can I describe how moved I am by his great affection ?
He settles himself once again on the kitchen floor as I move there and begin to wipe the kitchen island
I kneel next to him --sudden tears springing to my eyes and tell him how grateful I am to have him for my child
R wraps his skinny arms around my neck and says a "tight hug then gentle hug then tight hug"
And I say both prayers ( for arent there only two ?)
A prayer of thankfulness for this gorgeous life
And a prayer to please let life always be this sweet
On Friday morning - R wakes up with hot forehead and flushed cheeks .
I call to let his teacher know that he will not be coming and she says that 50% of the school is out
By evening he is simply pathetic - weak and wan - and wanting to just lie in my lap and be petted
When we ask if he wants to go to the cabin - he answers pitifully "stay home "
But post Tylenol he is bouncing and begging to go to the "New Cabin New house"
So we pack and leave
We know the reason why he wants to go to the cabin is that is where the Wii is and he has suddenly rediscovered his passion for the Wii ( through videos in the youtube )
We snuggle in bed and watch the Inspector Lynley Series ( we borrow the DVD's from our library - for free ) - while R nestles with his arms around my waist
Saturday
DH and I are both under the weather .. We loll around all morning too listless to do anything -
By afternoon we summon up enough energy to go to town .
R asks to eat at Mc Donald's
We go through the drive through pay for the nuggets s but forget to take the chicken - its so funny that R is the only person who notices and as soon as we drive away - he squeaks from the back seat " chicken chicken"
He he he - the person with the poorest executive functioning skills - has the best
DH and I smuggle his Mc Nuggets into Chick-Fil a so we can eat their amazing Spicy Chicken Burger
We continue with our lazy day and watch two movies
The Kids are all right
pretty good. Story of a gay couple ( Julianne Moore and Annette Benning ) who have two children through a sperm bank) . Kids grow up and contact the donor and he comes into their lives
Going the distance
nice romantic comedy with DH's favorite Drew Barrymore
Sunday
If Saturday is a lovely day of sloth
Sunday is a day of chores
DH, I and R take a long walk around the trails of the cabin .
R has some confusion regarding the purpose of a walk and thinks he should be carried - or swung between us and we do this from time to time
We go home and while R has therapy - DH and I cook for the week
At 6 in the evening - we discover with a shock that his HW to collect a 100 random things for school is due tomorrow - and we ask his ABA therapist to help him with this
Monday
In therapy, R is reading a book called " Mr Noisy"
He has a lot of difficulty dealing with the loud sounds and his teacher has suggested reading this book with him to help him cope
When his therapist asks him how he feels when people are noisy and shows him the options
his hand hovers for a minute over the word "mad" but then he moves quickly over to "scared"
and he says " I feel scared"
( this is another discovery she made - R can answer most questions when given multiple choice options - but not when asked open-ended question )
I am so proud of him that he can identify his feelings correctly
Tuesday
I read some of the comments on my Hopeful Parents post with dismay.
Many have written very nice comments
But a few misunderstand my point and either assume I mean they should "love autism" ( not my point at all )
Or that I dont have a really autistic child and am dismissing the pain of parents of kids with severe autism ( not my intent either )
DH is such a comfort and so are your and my other friends comments.
Thank u so much
To cheer myself up I indulge in some dreadful sin as we go to TGIF for our date lunch and share the brownie obsession with DH
But OMG its sooo good
Wednesday
R and I have a lovely evening
My "30 minute Floortime- then let yourself off the hook" - idea continues to be pure genius
Its really easy to find opportunity to floortime anywhere
For instance while on our indoor swing
I take up various stufffed animals and sing
"If you are Diego and you know it ... shout back pack"
Then I hold up another toy and let R fill the blanks
"If you are ------ ( R fills in "Baby Jaguar" ) and you know it , ..... ( r fills in - "clap your paws")
he has difficulty falling asleep today .
Finally I give up and ask DH to lie with him
DH tries for a while but is annoyed becasue "R keeps mewling for mother"
And tells him that he must sleep by himself
I come back an hour later and find R fast asleep but in the bathroom .
Where he has done his sleep routine of reading the Teddy Bear counting book ( which I must read in Spanish- atleast all the numbers - this is a great trial for me -)
He looks so sweet and small and when I pick him up and put him in his bed he wraps his arms tightly around my neck and so I lie next to him "for a while"
But then wake up when the alarm goes up feeling cramped and stiff in R's tiny bed- with DH boasting about the lovely sleep he had all alone!
Thursday evening
DH takes R to muscial gymnastics -
And I take a long walk and also fry Samosas ( like Peirogies ) to ingratiate myself with DH .
R has had school followed by Speech therapy, Play therapy and then Gymnastics so we simply roll around on the floor for literal Floortime
R is mad for DH's white mac
He is always asking him "please can I have a Papa's white computer please"( we have taken the Nancy Kauffman idea of giving the child certain scripts and this really works great )
Nowadays DH makes him answer 3 questions before he gets the white computer - a great strategy
I move around the house clearing up and R moves with me precariously balancing the heavy white laptop - as I pick up and move every 5 minutes - he needs to move every few minutes to stay close to me
How can I describe how moved I am by his great affection ?
He settles himself once again on the kitchen floor as I move there and begin to wipe the kitchen island
I kneel next to him --sudden tears springing to my eyes and tell him how grateful I am to have him for my child
R wraps his skinny arms around my neck and says a "tight hug then gentle hug then tight hug"
And I say both prayers ( for arent there only two ?)
A prayer of thankfulness for this gorgeous life
And a prayer to please let life always be this sweet
15 comments:
as always I have a smile on my face after reading these posts. I'm interested in learning more about what you wrote about teaching a child a script. I've heard mixed things from therapists on this.... but if it's appropriate speech, I'm thinking I really don't care if it's scripted. I mean, kids copy and learn like that at first anyway, right?!
you know that is my POV
R never scripts inappropriately
another thing that Temple Grandin said - applies here
She said auties may learn by memorizing
but that is okay
as they need to have a repertoire of lots of scripts to categorize and be able to pull from
Like you I've found that phrasing questions as 'multiple choice' rather than open ended works much better. As for scripting, I agree with Temple Grandin: as long as it conveys what R wants to say, who cares if it's scripted or not?
I love how sweet your life is ... because you make it so. ((hugs))
So sorry you got some negative feedback on your Hopeful Parents post. I think some people are so angry, it's hard for them to see past that. But the comfort you took looks delicious!
He looks so sweet asleep on the bathroom floor. I would have snuggled in bed with him all night too :)
Why thank you!
Love reading your posts, K. Like everyone says - I feel good reading about your sweet life and I agree with Brenda - you make it so.
Such wisdom to have only 2 prayers. I have asked you before - will you be my floortime therapist? ;)
Barbara
(Dr. Boucher)
The negativity toward you was simply displaced anger. I know how hard you and DH have worked at the beautiful life the three of you have. Sometimes when people see something they wish for so badly but do not have they lash out. But maybe your words have planted a tiny seed of positivity that someday will grow among those who are still too angry to be grateful for what they have and what they do not. From the outside, it is always easy to look at somebody's life and say how "lucky" they are. What they don't realize is how hard we work and fight for that "luck." I needed your beautiful post this morning and as always you deliver. Have a great day dear friend and happy Valentine's Day!
What a lovely post, I very much enjoyed reading it and seeing your photos. Sorry to hear that you feel commenters missed the point of your Hopeful Parents post. Many people are angry, but also many more people are not so great at expressing themselves in words. I always try to think of that when I get comments that I don't appreciate.
I am very much interested in pursuing floor time for Maya but no one hear teaches or does it and there is a lot of conflicting info out there. Do you know of a good site where I can learn more about it?
Thanks again for your beautiful words!
My kiddo had to find 100 things as well (I found that many tiny vehicles and then we counted them a few times to make sure we had the right amount.) I just love your summaries! My DH has been gone to work so far two out of three weeks this time and my kiddo begged to sleep in my room so I have been sharing my sleep space with him (remembering now that, while asleep, he moves a lot, stretches his legs a bunch but then also will reach over and pet my arm, lol!)
Very nice post! Your posts are always so peaceful. I agree with what you said about the scripting. A does some scripting and oftentimes I don't even recognize it as scripting until one of my other kids says it is from a movie or TV show. I don't have a real problem with it if it is appropriate and gets his meaning across.
This post reminds me of a few FT sessions I've had where I've shown up with great intentions to elicit engagement and vibrant circles of communication, when it was in fact the child's idea to have a good ole fashioned nap... and not because she was feeling "sluggish" but because she was just flippin' tired. How could I blame her? Both those times, my FT technique was to join her in her pleasant sleepy vibe and offer some good deep pressure and brushing. She fell asleep both times. But boy did I feel like a loser... until I realized how much she needed it.
Love the "multiple choice" technique. Will need to use that more often.
Also agree that sometimes scripts can be very useful, especially when it comes to navigating in stressful or anxiety-provoking situations. We all do a little better if we can prepare our minds with a fair supply of useful things to say. That's why idioms are so great.
I love this post and I love your attitude. My son is 4 and was recently diagnosed with PDD-NOS. He is already receiving services similar to your son's and is doing great, but I'm still struggling with fear and confusion. Thanks for being out there!
Sounds like a lovely and productive week ;-)
Loved the lazy trip to the Cabin!
xx Jazzy
Your posts are lovely and sweet as ever. Always capturing the moments. I love that. :)
Your Little one looks so sweet... I do this too ..cuddling up with the little ones and waking up all stiff and cramped. It is very much worth it.
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