January and February have been hectic and I am piecing them together from pictures before they are gone from my memory
Like everyone else we have also had the sickies -
Especially R has not had a good stomach for almost a month .
He keeps getting okay and then keeps getting worse .His appetite is very low Its very depressing .
The skies are almost perpetually grey .
Sometimes watching the mist roll over the mountains is beautiful but I yearn for the yellow of the sun
But enough about the depressing bits.
I read somewhere that one of the most powerful tools in life is focus. ie you can change the way you feel about your life by shifting your focus to the good things
I have always found this to be the most effective thing !
And of course there are lots of nice things that are also happening with R & us
Winter is full of its many pleasures of real wood fireplaces
My 13th wedding anniversary where we tell each that we wont get each other anything but DH gets me these gorgeous flowers ( how lucky am I ?)
I usually have to travel quite a bit for work but this month I have not traveled at all and DH and I have had many chances to have lunch together
Stuck in a Rut
I am stuck in a rut with Floortime
We are really not doing much
We try to make sure that we spend time outside the house ( away from our screens )
So we go for lots of walks
To the library
And for errands
We also employ the other crutch when Floorime does not come easy - we do fun things outside
We go to the indoor water park at an ASA event and R has so much fun
and I try to make everything I can very interactive
But I am depressed
I have these periodic moments where I suddenly realize that there is so much to do for this most precious of all things and we are not doing it
( Though I sound like i am criticizing my parenting, I really am not. I honestly believe we are very good parents..Sometimes we are just not doing enough )
I just found myself looking into a training program to go to ( which is my usual coping mechanism when I feel stuck )
(This time I was looking at the Sonrise program in June - Have you read the book by Barry Kauffman ?- its really great and I have also listened with great admiration to Raun Kauffman's interviews,.
I was really lucky that I picked up Dr Grandin's , Tito's and the Son rise books - when we first had our diagnosis.
Our idiot psychologist- we never went to see him again - recommended a rotten book called "The World of the Autistic child" by Bryna Seagal - outdated book and a fountain of doom and gloom ) .
It sounds like a lovely program and would be like going on a retreat ( I have read quite a bit about this and Floortime and Sonrise have many commonalities that make them appeal to me and DH ) .
Sonrise especially focuses a lot on happiness and acceptance and I feel I need that now .
But its a very significant time investment - also I worry if it may be a little basic program is really for us now.
DH is looking into it as his analytical brain holds us in good stead when we are looking into new things that may help R.
Though the program I know would benefit us,( and indeed we may still go ) I know that this is a stress response -
The problem really is not the lack of knowledge and the training ( we have so much of that )
The problem is the doing
I remind myself of my old mantra "Seek less, do more "
I tell myself that I just first need to get back into the Floortime habit ( for Floortime is a habit )
We need to going out to play every evening.
Otherwise the evening whizzes past in TV and chores .
Dr Greenspan used to say that "half of the game lies in just showing up"
I tell myself that I can at least do that - show up !
R plays a lot of interactive games these days but at first they are very repetitive
Like he will say with great mischief in his eyes ( don't you love his face? )
Like everyone else we have also had the sickies -
Especially R has not had a good stomach for almost a month .
He keeps getting okay and then keeps getting worse .His appetite is very low Its very depressing .
The skies are almost perpetually grey .
Sometimes watching the mist roll over the mountains is beautiful but I yearn for the yellow of the sun
But enough about the depressing bits.
I read somewhere that one of the most powerful tools in life is focus. ie you can change the way you feel about your life by shifting your focus to the good things
I have always found this to be the most effective thing !
And of course there are lots of nice things that are also happening with R & us
Winter is full of its many pleasures of real wood fireplaces
My 13th wedding anniversary where we tell each that we wont get each other anything but DH gets me these gorgeous flowers ( how lucky am I ?)
I usually have to travel quite a bit for work but this month I have not traveled at all and DH and I have had many chances to have lunch together
Stuck in a Rut
I am stuck in a rut with Floortime
We are really not doing much
We try to make sure that we spend time outside the house ( away from our screens )
So we go for lots of walks
To the library
And for errands
We also employ the other crutch when Floorime does not come easy - we do fun things outside
We go to the indoor water park at an ASA event and R has so much fun
and I try to make everything I can very interactive
But I am depressed
I have these periodic moments where I suddenly realize that there is so much to do for this most precious of all things and we are not doing it
( Though I sound like i am criticizing my parenting, I really am not. I honestly believe we are very good parents..Sometimes we are just not doing enough )
I just found myself looking into a training program to go to ( which is my usual coping mechanism when I feel stuck )
(This time I was looking at the Sonrise program in June - Have you read the book by Barry Kauffman ?- its really great and I have also listened with great admiration to Raun Kauffman's interviews,.
I was really lucky that I picked up Dr Grandin's , Tito's and the Son rise books - when we first had our diagnosis.
Our idiot psychologist- we never went to see him again - recommended a rotten book called "The World of the Autistic child" by Bryna Seagal - outdated book and a fountain of doom and gloom ) .
It sounds like a lovely program and would be like going on a retreat ( I have read quite a bit about this and Floortime and Sonrise have many commonalities that make them appeal to me and DH ) .
Sonrise especially focuses a lot on happiness and acceptance and I feel I need that now .
But its a very significant time investment - also I worry if it may be a little basic program is really for us now.
DH is looking into it as his analytical brain holds us in good stead when we are looking into new things that may help R.
Though the program I know would benefit us,( and indeed we may still go ) I know that this is a stress response -
The problem really is not the lack of knowledge and the training ( we have so much of that )
The problem is the doing
I remind myself of my old mantra "Seek less, do more "
I tell myself that I just first need to get back into the Floortime habit ( for Floortime is a habit )
We need to going out to play every evening.
Otherwise the evening whizzes past in TV and chores .
Dr Greenspan used to say that "half of the game lies in just showing up"
I tell myself that I can at least do that - show up !
R plays a lot of interactive games these days but at first they are very repetitive
Like he will say with great mischief in his eyes ( don't you love his face? )
R: Eat a ..... stick
Me: Gasp ( mock horror ) ... R what is this .. no eating stick !!!
R : giggle and laugh at this
Then R will say : Eat a cloud
I have to respond with the same pattern otherwise he will cry
Or he will write a fact that we all know is wrong like this one where he says" the banana is blue"
And I have to squeal "What ?!!!!" and this will cause MUCH amusement
You get the picture -
Now there are several patterns -
But they are all patters that once formed will have to be "performed" in the exact same way !
This will look very interactive from the outside - but its the exact demonstration of the quality ( fixedness) that floor time is most supposed to help with
So while there is a lot of back and forth going - it is not Floortime
Dr Greenspan used to say "if you know what is going to happen next .. you are not doing Floortime "
I get some advice from the the Floortime yahoo and other Floortime friends
And try to build on it
For instance we play on the slides with Coke and Sprite ( one of his enduring obsessions )
Even better- - one day we do the Diet Coke and Menthos experiment ( he has been watching this a lot on youtube - the you-tube History is a real window into his world )
Slowly and steadily we are climbing out of our rut
I keep forgetting is that Floortime is also addictive
For me AND for R
In just a few days, R is and seeking me out trying to make me come out to play with him
Eager to go out
The other thing I had forgotten is how much fun I have playing with R and seeing the little connections he starts to make
How many times do I need to learn the same things again?
The two cliches of "The only way out is through" and "Fake it till you make it " are both so true
The sickies are still here( DH Is going to take R to the doctors on Monday ) but my joy is coming back as well
The other day Miss G comes down to show me a Valentine card that R has made
"I told him to write to make a heart with a V and a 3 .. and write - I love you .. but of course he wrote - I love you mama"
I may not always feel like the best mum .. but I always feel like i have the best child
I have to respond with the same pattern otherwise he will cry
Or he will write a fact that we all know is wrong like this one where he says" the banana is blue"
And I have to squeal "What ?!!!!" and this will cause MUCH amusement
The banana is blue |
You get the picture -
Now there are several patterns -
But they are all patters that once formed will have to be "performed" in the exact same way !
This will look very interactive from the outside - but its the exact demonstration of the quality ( fixedness) that floor time is most supposed to help with
So while there is a lot of back and forth going - it is not Floortime
Dr Greenspan used to say "if you know what is going to happen next .. you are not doing Floortime "
I get some advice from the the Floortime yahoo and other Floortime friends
And try to build on it
For instance we play on the slides with Coke and Sprite ( one of his enduring obsessions )
Slowly and steadily we are climbing out of our rut
I keep forgetting is that Floortime is also addictive
For me AND for R
In just a few days, R is and seeking me out trying to make me come out to play with him
Eager to go out
The other thing I had forgotten is how much fun I have playing with R and seeing the little connections he starts to make
How many times do I need to learn the same things again?
The two cliches of "The only way out is through" and "Fake it till you make it " are both so true
The sickies are still here( DH Is going to take R to the doctors on Monday ) but my joy is coming back as well
The other day Miss G comes down to show me a Valentine card that R has made
"I told him to write to make a heart with a V and a 3 .. and write - I love you .. but of course he wrote - I love you mama"
I may not always feel like the best mum .. but I always feel like i have the best child
35 comments:
I started to read through this and thought "I wonder if they have thought of the Sonrise program...." and there it is.
I had re-investigated it just yesterday after watching a video of a family using the program. I think I have a hard with it because I didn't grow up with a hands on play with type of parent. Not that she didn't love me and show it but the only time I remember 1:1 play time with an adult was with an aunt one time. I wonder if that's what she's missing.
I think it's the part where we know we are good parents, heck even great parents but we as Autie parents will always feel we are not doing enough unfortunately.
You've given us so much to think about with this post...
With unending greyness and sickies, it is no wonder you are feeling down. But I know how you are feeling... you know what you should do, but somehow don't feel like you have the energy to do it. Inertia takes hold, or you feel like you are going through the motions.
But then something provides a spark -- often something wonderful that our child does -- and you are back on track again.
I heard Raun Kaufman speak at a conference one time and was captivated. We couldn't commit to doing the Son Rise program, though. Like you say, it's a big investment in time.
You've got the most beautiful gray skies in your mountains, but here's hoping for some sunshine headed your way.
Sorry to hear that he has not been feeling well - that is so hard to watch when you want to fix it for them, I know.
I have a friend who has done Sonrise and found it helpful - her son seemed mostly unaware of her for a long time and they really seem to focus on making a connection.
I had a thought when reading about how he wants the same thing over and over. I can relate on a less intense level to wanting to have an action create the same reaction every time and being frustrated when it doesn't. I gravitate towards things and people who are predictable and tend to run away from those that aren't. I have to be very motivated to stick with something or someone that doesn't give me the results I want. (That probably sounds terrible or heartless, but it's true.)
With my son, I have often gone along with his routine for a while and then would test him to see how he would handle something different. Eventually, he developed to the point where I could give a different response or ask a different question, and now he can understand when I warn him that I am going to do something differently so he at least knows that I realize it's not what he was expecting. Knowing something different is coming is a huge help to me to not react badly to it.
Sorry this is so long - I am just really starting to process a lot of these things in terms of my own experience and am finding it quite fascinating. I really have no idea if it will be helpful to others, but hopefully something may be of use.
I too have to learn the same things over and over...:) good that you found your footing again... I think R would love the swimming pools on this side of the sea.
It sure seems like you have been doing a lot. Don't beat yourself up. Just get back into the routine of it all, and you'll feel better. Huge Hugs!
I bet he would too
sometimes when I see the pictures of the hot springs they look fascinating
This post and your pictures show how much you have been doing. The day is only so long and there is only so much you can do! Don't be so hard on yourself ;-)
xx Jazzy
that is a great tip Trish .. warn the different - will try it
yuji its the exact same here with the time commitment .. one mother was saying on the yahoo board the other day "wonder where he would be if we had done a full floor time program of 40 hrs per week right in the beginning instead of the rag tag program we set up"
I wonder the same :-(
Lauren and Jazzy xoxoxoxoxoxo back at u
EXACTLY ! the not enough conundrum
Awwwwww! I love how he addressed his valentine! That's one thing that never changes...his love for you (and DH.) I hope he feels better soon!
I think we all struggle with wondering if we are doing "enough". Alex has been discharged from all his therapies so I constantly worry about it. His therapists stressed the importance of keeping him "engaged" so I arrange playdates, he plays soccer and basketball, does Cub Scouts, etc. However, none of it targets his areas of difficulty so it never feels like enough.
When he was first dx, we did RDI which I really liked. I still use aspects of it in everyday conversations, but we don't practice it anymore.
I think you do a lot with R!! None of us can live and breathe it 24/7. You have invested lots of time and energy to R and it shows in how happy he looks in so many of his pictures. Hope he is feeling better! Love the pictures in your post!!
I have no words of wisdom for you except that I am wishing I could bring you a big bunch of daffodils and give you a big hug.
I appreciate that so much
Thank you
Thank you for the nice comment kris
You are so right
Xoxo .. So true robin
i love these pictures of R. i hope you all feel better soon. i totally get the stuck in a rut feeling. the sun is rising. xo
Thanks for being honest about your Floortime rut. I feel as if we are in one, too...and then the guilt tries to kick in, but of course it gets us nowhere. You are a wonderfully loving and accepting mom! Remember that first...I think what can tire us out is that Floortime is play but it is also work. Our kids are wired to so easily slip into familiar patterns and it is truly work sometimes to keep things "out of the box." You're not alone!
Deb thanks for sharing that ...its very good to know that I am not alone in feeling in the rut
One of my friends was saying we should not feel bad about getting in a rut from time to time as that is precisely one of the challenges our kiddos have
right back at you darling
You know something, you are a great mum... this is really evident in your pictures, your blog posts and the happy face of your boy. K, we can only do so much, no matter what therapy we do, our children are always going to have challenges. No matter how much time we spend on our chosen therapy, our children are still going to have challenges. I think it is so important to have a balance in our lives, really I do. Don't beat yourself up.. life is there for us to enjoy! :)
Di x
"I told him to write to make a heart with a V and a 3 .. and write - I love you .. but of course he wrote - I love you mama"
Love this. I love that you know you are a good mom and you strive to do more. So often we feel that we are not good parents because we aren't doing everything. It's refreshing to read someone who knows they are doing a good job. (because you ARE doing a good job!)
mwaaah
I realized a little while ago that autism super-parenting is not for for - the early books we read on this journey like the catherine Maurice book or the boy who loved windows - reinforce this view - of the supermom that helped this child in an amazing fashion. But its too much!And I started to learn to be happy for myself as well
Thank you darling Di
K - Know that we all feel like this at times. I feel like I'm not doing enough or doing it right. That if I only had a new book, a new idea THEN ... Then what? My son would be doing "better"? What does that mean? Why is my mood attached to an outcome?
For some reason, these always hit me in the grey of winter.
Some ideas - reject if they don't help: Hire someone (a college or high school student). Teach them very basic games with your child. They bring fresh energy and enthusiasm and won't mind doing the repetitive games.
Second - the repetitive games are fine! I think Greenspan meant don't ask a question you already know the answer to - like Did you go to school? Because it leads nowhere. All I did when J was young and s/t even now (esp when he's sick) is repeating games. Repeating is sometimes exactly what they need. We threw spoons off the back of our sofa into a metal bowl for years. I can give you endless examples.
Third - Support group for venting and fresh ideas. We need to figure out an online way for us to do this. We can.
xoxoxo
brenda thanks for the fantastic ideas - i love your point on repetition
we totally need the support group
I love it when you talk about Floortime. I relate to so much of the "down" feelings in this post...and the bit about how many times do I have to learn the same things? Thanks for being real about that. You're right that focusing on the positive helps so much...and that spending quality time with our guys and seeing those connections being made is addictive! :)
Ohhh the winter when it turns all grey and dark. That is the worst time of the year for me. And it sneaks up on me too. I'm so there with you. Hang in there. But we're half way through February---spring is near!!!
And you are a fantastic mum. You are present and that's half the battle.
Hugs darling
I guess we are both down in the dumps together :-)
( well not really but you know what I mean )
Hallelujah for Spring
As always a beautiful and thoughtful post. I think as mommies we all sip from the guilt koolaid all too often. That being said, I wonder if the lack of self-appreciation actually makes us better moms? If we constantly tell ourselves that we've done enough or it is good enough, would we be like a dead shark floating in the water rather than a live one on alert for what is coming our kids way -- both good and bad? As long as we don't let guilt drive us to despair and channel the emotion for good and not evil, it actually might be an old ally that can keep us moving and moving forward.
xoxo
love it- discontent as a source of progress - adore the dead shark visual you made me LOL with that one
I'm sorry you guys are feeling sick and that you're feeling blue. I completely empathize with your coping mechanism. I have one too, only mine is usually to start writing people letters: our Council, other government officials, the BBC...
R's repetitive games sound very much like my own son's.
And the pictures of your home and the mist: absolutely stunning! I get how that can get depressing after a while though, and I do hope you get your yellow sun back soon!! :)
PS. The menthol experiment?? You guys did that? *So cool!* Someone posted it on facebook and it's def on my to-do list..
Marsupial Mama thank you for your kind words. Also you have absolutely got to do the menthol expt - its awesome
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