Saturday, January 26, 2013

The last days of January

When a new year comes there is a  large part of it - in which I keep writing 2012 by mistake and yet the entire month of January is coming to a close

Its been a month of sickness in our house unfortunately

DH and I at our wits end trying to figure out why R's tummy troubles are going on for more than a month

He tends to throw up a lot and complain of belly hurts. His appetite is low and he has lost 4 pounds from an already thin frame :-(

We found a GI specialist and started a course of Flagyl ( a super strong antibiotic that comes with its own batch of misery )

If this does not fix it - we will need to explore ulcerative  colitis - a depressing thought

But we can adjust to this like we adjust to most things

Attitude is everything 

But in spite of all these things, I am discovering for myself that  in life attitude is everything

Forced to slow down we spend much of our evenings snuggling on the couch


One day, on top of everything else our heat went out too on the weekend ( a below freezing weekend all the time ) and R and I just pretended we were having a camp-out in front of the fireplace

DH chopped wood and both fireplaces going and had a rather nice time
 Forced to slow down, we discover little slow down pleasures

needing to work one weekend, I take R to the office and I can see how much I rise in his estimation as he discovers that I work in a place with its own vending machines
And cokes and Sprites

And elevators - I think I see his joy in seeing the symmetry of  layers of rooms which is - what an office building is
Our excursions have become limited - but even an outing at the local chain restaurant provides us with much joy
We think some of his stomach problems are psychological as well as he is able to retain the chicken of Applebees and the new gluten free pizza of Dominos

Also at this restaurant I discover that he is a demon at word search ( or atleast he is better than I am )

One of the things that makes it possible for us of course is the choice that DH made to be a SAHD - and I give thanks to god for it often

I hate to think, what it would feel like - if R woke up crying saying he was feeling sick - and us having to send him to school regardless

Instead - he can be at home and recuperate

New Beginnings

I don't think autie parents  ever feel settled until they have an home therapy program and running

4 and a half months later I can finally say we have a set of home therapists that we like, that R likes and who like R
I get the strange feeling of dejavu ( as this is what his old therapists would do )  when Mrs D runs upstairs to show us  how she discovered how interested he was in bees and how she is teaching him to draw

( I think back to Miss Sadie in Tennessee who taught him the "Bringing home the baby bumblebee" song...and how Miss Gypsi bought him a book of insects )

I think learning is like a river with all his therapists adding new streams into it
Where am on Floortime in all of this?

NOWHERE -I have to honestly admit that I have done so little these past 6 months on Floortime -

I really need to get it together and get moving on this

I dont feel guilty about it as it is not unexpected

If you are a floortimer - the first thing that needs to be in the right place  - is you

And I have been all sixes and sevens so much of this past year

Getting Settled

But even though life continues fast paced - i feel so much more settled than I did even a month ago

Life for most of us is a juggling act with many things up in the air - but when the things up in the air become familiar things - you can tackle more things

We are at at this stage now

DH and I are back to the meal planning cycle we have -

I make a menu plan and grocery list Friday morning.

DH shops on Friday . We cook at some time on Saturday. We do a little laundry and a little housekeeping all week . We have a cleaning lady in on Mondays

In this way we are back to being super organised with our logistics and  we keep Sunday free

Most people say they have no time to plan . But DH and I know that if we don't, nothing else can function

Even with the health problems - I feel in a much better place emotionally than I did even a month ago

DH and I have been noticing  that while in many subtle ways R is progressing , but in some ways, he is stuck - he is back to watching the same videos over and over again , he has missed so much school

I am finally ready to get back to my floortiming ways.

Its about time

More on this later





21 comments:

BabyWeightMyFatAss said...

Oh lot's of hugs. New home, new part of the country so many changes for everyone. Do you think some of his stomach issue could be anxiety and nerves? Poor thing I hope you find answers soon. As in my life when there is progression in one area there likely will be regression in another.

Lyndsey said...

Poor darling R! I want to give him and you big (((((squeezes))))). I hope you are able to find a solution to his tummy troubles.

Bright Side of Life said...

I have been thinking about R and wondering how his tummy troubles have been. Poor boy. :(
Isn't it just crazy how time passes by so quickly. Do you think it is a function of us growing older or perhaps we are too busy and need to do as you did... slow down?

robin said...

A lot has changed in the recent months...I'm so glad it's smoothing out! Hope R's tummy problems go away soon! I'm impressed with all the vending machines at your workplace (I definitely bet R was too!) I'm happy you guys like the therapists...I'm sure the schedule will fit in place even better soon and your floortime will come as well!

Li said...

Poor R, that is so difficult. I hope he feels better soon. You guys have had so much change over the past few months. I hope you get a break soon.

My husband has celiac disease and my son is allergic to milk protein so we are very familiar with digestive troubles. Despite our family history, I'm not a booster for the GFCF diet (doesn't make any difference at all for a lot of kids) but maybe an elimination diet for R might help you pinpoint the potential problem? Ignore this if it isn't helpful, just thought I'd share my experience.

Floortime Lite Mama said...

Thanks so much for your kind comments

@babywt - I am adding your blog to my list - just noticed that I did not have it on my list - loved your recent post

@ Lyndsey - do you still blog - I miss ur darling girls so much
@robin - u have been in my thoughts

@ Li - that was most helpful - we are there - we did the testing for Celiacs and that came back negative

@ Di thanks so much for the hugs - I think its a combination - in the happiness project - Gretchen Rubin showed a movie that the days are long - but the years are short

Looking for Blue Sky said...

I really hope that R's tummy problems get better soon, perhaps he is still coping with the move? A lot has happened in the past year and you're all coping so well, it sounds like taking things easy as you have been is a really good way to live (am doing something similar) and no way should you feel guilty that floor time has been put on the back burner: at the right time, it will re-enter your lives xx

Marsupial Mama said...

I am so sorry he's having stomach issues. I really hope he gets better soon, that kind of thing is not fun for anyone. :( But he is so stinking cute, I love that you rose in his estimation cause you have vending machines at work! The camp outs sounded really cozy (though I know not having heating must have been a real pain). I love his drawings! We've been getting stuck in a coloring book rut, I guess it's time to shake things up! ;)

Anonymous said...

I had some ideas about the stomach problems. The other day I read this post on another blog http://myautisticmuslimchild.com/?p=2252 If the link doesn't work it's about an autistic girl and her ponytail. Have you tried stopping any supplements he's taking? You could try that for a week or so to make sure they aren't to blame. Then since he doesn't vomit when eating certain things, maybe try letting him choose his own foods for a week or so to see if he improves. Even if it's repetitive or not organic. I would try some things before I jumped into a medical procedure.

Floortime Lite Mama said...

@looking for blue sky - I love going with the flow these days
@Marsupial mama - lovely to see you again
@anon - Thanks for the ideas - we stopped all supplements. we do let him eat what he wants - but when we let him do that for all meals - he only wants junk like pringles and cheetos :-)

Rachel said...

That very first picture, makes my heart hurt! Praying for some answers for you for your darling soon!

We are sick again - else I would be knocking down your door to get out and play - even in the rain!

I am so sorry it does not seem like it - because I am a terrible friend - but we are so very glad you are here. Especially when reading how R's support team has fallen for him too :)

Anonymous said...

Hi FLM,

As a follow-up to your observation about the value in a settled home program for R, I'm wondering if you can describe the process you go about finding/hiring home therapists as well what R's home program is comprised of in terms of hours & days per week, general type of goals (self care, academic, social etc) and, if you're comfortable, commenting on how you go about determining appropriate payment to the therapists. Now that you've gone through the process several times, what tips can you give parents who are trying to set one up? Thanks!

Bonsky said...

So happy to hear you are settling in to a new normal (even with the tummy problems). i had a zillion tests when I was a kid for tummy problems and it wasn't until I was in my twenties that they found my Crohns. I do feel strongly that tummy and stress is deeply linked in little kids (grown-ups too). Hopefully R will outgrow this the more he settles in. If not, try not to worry about any future diagnoses. It will just make you crazy and serve no purpose. If he does have something, there are so many incredible tools to manage tummy problems -- many of them non-invasive. And so what if he just eats pringles and cheetos and junior mints and Sprite for awhile. It might provide some insight into the situation. If not, at least he will be loving mealtime for awhile. And don't forget hugs and kisses are therapeutic for whatever ails you.
xoxox
Bonsky

Anonymous said...

When I was pregnant and really nausious I was just eating pringles, that was for weeks maybe, I remember feeling like I had to throw up, but I could eat pringles for some reason plain ones. Maybe he's nausious. I'm really sorry he feels bad. I wish it will get better soon.

Kim said...

Oh poor little bug, I hope his stomach troubles are cured soon!

Tanya Savko said...

So sorry to hear about R's abdominal pains. It is such an ordeal to go through all the testing to find out what's wrong (I experienced this with Aidan a few years ago). I am so with you on the menu planning - I have to do that or I am all over the place! Keeping you in my thoughts with R's health. Lots of love to you.

Þorgerður said...

too bad R has been sick but so happy for you that things are falling into places..best of luck

lisa said...

I just now got to catch up on the January posts, and I am sad that R is having tummy problems, but like Bonsky, I also had them as a child. I did outgrow them, but they are still my "stress container", much like headaches are for others. I hope to talk with you sometime soon, I found pictures of us all at the Whitestone and it brought back such sweet memories. So much as changed in my life this past 6 months...let's do catch up soon!

Jennifer Saul-Avila said...

If it is ulcerative colitis, at least there could be an end to it. My brother had it as an adult & he lost a ton of weight (for him) and was so pale & sickly looking while he was figuring out what was wrong & starting the changes needed to get over it. he's fine now - he avoids certain foods that aggravate it, but that's it.
It could be stress. And the thing about some foods staying down may not be just b/c those are ones he really likes - but because they happen to be ones that also don't upset his tummy.
Tummies are hard. I'm still trying to get time in our schedule to get my kid to a gastro doc. His tummy issues are MUCH better than they were before, so I feel like I can procrastinate - until he has another bout of constipation & gas pains.
Good luck to you!

Floortime Lite Mama said...

@bon - thanks so much for the comforting words - the way you have dealt with tummy trouble is very comforting and inspiring
@Lisa miss u 2
@Kim and @Tanya @porgerour- thanks so much
@anon 1 - I can see why salt and vinegar is refreshin in nausea
@Jennifer - thank you so much for the comfort - strong suspicion that it is that
@Anon 1 - you will see in my post
how to run a home therapy program" and what I wish I knew about therapy" if you want more specific advise - please feel free to email me ktankha@gmail.com

Yuji said...

I hope R has had a better week. It is always tough to see your child not feeling well. But I'm glad that things are otherwise starting to fall into place. Here's hoping for more good times for all of you.

Floortime Lite Mama

On my life as the mother of an adorable 5 year old with Autism and Apraxia