Jane's Rainbow: for all needing support & comfort

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 16 Sep 16 - 10:29 PM

The last few posts made me laugh, and laughter is the best medicine, so I feel good!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: frogprince
Date: 16 Sep 16 - 02:04 PM

THE VIPERS ARE COMING!! THE VIPERS ARE COMING!!






Vitch vindows do you vant viped ?



(from one of the stupid skits always performed at summer camp)

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Pete from seven stars link
Date: 16 Sep 16 - 08:26 AM

Ve ave German blood yah.....    Double groan !

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Sandra in Sydney
Date: 16 Sep 16 - 06:05 AM

groan

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Rapparee
Date: 15 Sep 16 - 10:12 PM

I was going to write a poem, but you said hoped things were no verse.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 15 Sep 16 - 08:07 PM

I hope All's Quiet means All's Well, or at least no worse.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: keberoxu
Date: 15 Sep 16 - 04:45 PM

and refresh again

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: keberoxu
Date: 09 Sep 16 - 02:59 PM

refresh

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Rapparee
Date: 08 Sep 16 - 07:20 PM

We have a saying out here: "The only way to the other side is through." Others can help, can give you support, but only you make the actual crossing. It's actually a very comforting thought because it reinforces the idea that you can actually do it...and you can.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 08 Sep 16 - 11:24 AM

Beautiful. Thank you.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Nigel Paterson
Date: 08 Sep 16 - 04:34 AM

I wrote these lines after our daughter Jane died. I hope Mysha will take something from them too:

"  'Shall we Meet in Avalon?'

And shall we meet in Avalon, or does our journey voyage on
To places never, ever seen where only those who've passed have been?
At journey's end, what will we find, comfort for the tortured mind?
Respite for the restless soul, with passing time, will we be whole?
Shall we be whole to laugh again, despite the anguish, tears & pain?
Shall we be whole to smile & say: "It's time, tomorrow is another day?"
Another day, a different course, (Death's trade winds blew with awful force.)
Our future waits, as yet unknown, but we are two, we're not alone.
The Love we share that binds us tight, enhanced by Friend's illumined light.
Wisdom, Care, Compassion, Healing as breakers struck & left us reeling.
Calmer waters now surround, recedes the risk to run aground.
This voyage complete, we sail again, more mindful now of other's pain.
More mindful now of what we've lost and how to bear & count the cost.
                                                                                             
                                                           Much Love to all,
                                                                                     Nigel.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Donuel
Date: 07 Sep 16 - 06:59 PM

Looking at Mysha and Janie's posts with fresh eyes I am remembering 8 years ago when Dean had no symptoms and began spending more time on the computer. With an open mind I can see him now and believe it looks like Aspergers hiding behind long hair and avoiding faces. Aspergers is something that can have a sudden onset at puberty. This changes the dynamic a great deal without eliminating all previous assumptions.
Thank you all, this will be explored during an appointment Friday.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: keberoxu
Date: 06 Sep 16 - 10:44 PM

Grateful to Jane's Rainbow for being here for us all, even on slow weekends with nobody adding posts. Thanks is too small a word, but thanks, regardless.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Donuel
Date: 02 Sep 16 - 12:45 PM

I forgot..

Rob's most annoying autistic artifact is speaking at auditorium levels,
anywhere. He is a natural Tim Conway comic who can fill a room with uncontrollable laughter. I'm jealous and shy but he is completely confident.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Donuel
Date: 02 Sep 16 - 12:33 PM

No Asperger's here. Dean is coming out of a simple but extreme neurosis that exaggerated hiding with embarrassment due to a digestive issue. He is back at school half days and far more communicative.
Robert was the one who didn't speak until a blow to the left parietal lobe that rendered instant speech at the age of six. While I struggle, he is a talented teacher and writer.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Mysha
Date: 02 Sep 16 - 03:49 AM

Hi Donuel,

This is really more about me than you, but I need to be sure someone said it. I've read your posts in the past, but I can't recall enough now and don't as yet have the energy to read back. But:

I have a diagnosis of Asperger Syndrome. I don't normally look people in the eye, as most people scream so loud with their expressions that I'd rather read their lips, which shows enough of their facial expression to read those peripherally (spelling?). Someone on a little girl's case at one point made the very smart observation that people will often ask or expect different things from what they want: E.g. do parents really need their child to clean the plate, or just for the child to eat enough?

So, what I need to say at the moment, just in case it's relevant, is that it pays to be careful to check what your target is: Does your child need to make eye contact? Or would it be OK to just read the face, or just face the person talking? Or is conversation the important bit, even if it goes sideways? (But if not a relevant remark, just forget about it.)
Most faces are intense, and at times I'd rather not look at them too much for fear of missing what people are saying. I sometimes wonder if I could have practised with that face program the Commodore 64 used to have. (It was clearly a face, but it had few details/expression. And it was clearly not human, taking away a lot of time pressure.)

Oh, and as in most cases: Don't fight the monster when it's there. Fight it when it isn't there, so there's less pressure and more preparation time.

Bye
                                                               Mysha
(Back to handling condolence cards that tell me my mother is dead.)

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Janie
Date: 30 Aug 16 - 06:54 PM

Wow, Rap! When do you get released to go leap tall buildings in a single bound?

Seriouly, great to hear the surgery went well. Pretty amazing to me that you are able to walk that far already, especially with minimal use of a cane.

Donuel, I have a couple of adults in my practice with what formerly was termed Asperger's. I don't know where on the spectrum Dean is. I do know both of them can get obsessively engaged with computers, software, coding, gaming, etc.

Probably complicates things a bit at this stage of your son's life in trying to impose interventions - teenager and all that.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Donuel
Date: 30 Aug 16 - 05:19 PM

You know all the things that helps bone growth like types of electricity, walking, diet, but do not apply sideways impact for some time.

Don't even do it by accident.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 30 Aug 16 - 05:02 PM

You go, Rap!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: maeve
Date: 30 Aug 16 - 10:11 AM

Rap, that's worth celebrating! Wow! Gadzooks! Fantabuloso!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Rapparee
Date: 30 Aug 16 - 09:42 AM

Yesterday I walked, mostly without a stick, for slightly over a mile.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Sandra in Sydney
Date: 29 Aug 16 - 10:00 PM

Spellcheck Rules!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Janie
Date: 29 Aug 16 - 07:59 PM

Oops. I guess so. Was posting from my iPad and didn't notice.

Sorry 'bout that Mysha. {{{{{{{{{hugs}}}}}}}}

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: keberoxu
Date: 28 Aug 16 - 04:08 PM

Janie! You probably gave Mysha a much-needed humor break! If unintentional...

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 28 Aug 16 - 02:26 PM

Donuel, I'm sorry your son is not improving.
Rap, I hope your knee continues to heal.
Mysha, we'll be here when you are ready.
Love to all the Rainbow's crew!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 28 Aug 16 - 11:11 AM

Thoughts and prayers, Mysha and Donuel.

Rap... glad to hear progress is being made.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Rapparee
Date: 27 Aug 16 - 10:21 PM

My Knee
by Rapparee
Grade 4

The nurses took the bandages off my knee last Wednesday. They said it looked really good. Now I am supposed to take physical therapy for six weeks.

It still hurts and sometimes it's all swelled up and red. But everybody says I'm doing wonderful.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Donuel
Date: 27 Aug 16 - 12:36 PM

I have hesitated to say but Dean has still not left his comfort zone but he did have a scared straight moment as a result of a school meeting. At the meeting he presented zero eye contact that resulted in the attendance officer to contact government social services to investigate if he is getting correct treatment.
A new shrink was arranged along with new medication. When the social worker asked him questions he was very communicative with limited eye contact. He also was presented with options from his retiring doctor that included electro shock therapy. He snapped out of it for a short time.

I still identify the internet as a villain who has robbed him of eye contact and an addiction that prevents real world exploration.
If screen time eliminates 200 opportunities a day to make real eye contact it adds up day by day until eye contact is alien and feels impossible. btw he has grown a remarkable 7 inches this year and in no way is he a tiny Tim anymore.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: maeve
Date: 27 Aug 16 - 11:52 AM

Hi Mysha - You don't have to post anything unless you wish to do so.
We will understand.

Maeve

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Donuel
Date: 27 Aug 16 - 11:02 AM

Only you can make all this world seem right
Only you can make the darkness bright
Only you and you alone can thrill me like you do
My rational and mashable yooou.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Mysha
Date: 27 Aug 16 - 10:41 AM

Thanks, crew. I am reading, I'm just not up to posting anything personal yet.

Bye,
                                                             Mashable

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Donuel
Date: 27 Aug 16 - 09:57 AM

Hey Lady, wanna get mashed? (smile)

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: maeve
Date: 27 Aug 16 - 09:43 AM

Hi Janie- Do you have Autocorrect on your device perhaps?

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Janie
Date: 27 Aug 16 - 08:24 AM

Holding you and your family in my thoughts, Mashable.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 27 Aug 16 - 08:02 AM

Thanks, m.

My condolences, Mysha.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: maeve
Date: 26 Aug 16 - 11:26 AM

New day, new challenges, new victories...

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Rapparee
Date: 24 Aug 16 - 09:12 PM

Thank you, Maeve.

I often quote Bill the Bard at times like this:

Our revels now are ended. These our actors,
As I foretold you, were all spirits and
Are melted into air, into thin air:
And, like the baseless fabric of this vision,
The cloud-capp'd towers, the gorgeous palaces,
The solemn temples, the great globe itself,
Yea, all which it inherit, shall dissolve
And, like this insubstantial pageant faded,
Leave not a rack behind. We are such stuff
As dreams are made on, and our little life
Is rounded with a sleep.

No more pain....

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Pete from seven stars link
Date: 24 Aug 16 - 03:38 PM

Thank you Maeve for relaying the sad but eventually expected. I am sure that I am not the only one with moist eyes offering a prayer for mysha.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 23 Aug 16 - 08:50 PM

Thank you, Maeve, for your update. I will continue to pray but will change the nature of my prayers.

This is my third attempt to post this message.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Sandra in Sydney
Date: 23 Aug 16 - 08:44 PM

sending good wishes to Mysha & family - & thanks to maeve for her thoughtful posts here & elsewhere.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: maeve
Date: 23 Aug 16 - 07:57 PM

Dear Crew of the Rainbow,

I've been asked to tell you that Mysha's mother has died and thus is no longer suffering. We will all understand how busy and confusing are the many things that must be taken care of after the death of a loved one, so please hold Mysha in your thoughts and prayers.

Respectfully,

Maeve

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ranger1
Date: 23 Aug 16 - 11:35 AM

I'm pretty much a lurker these days, too, but like Janie, I do check in and read.

Mysha, you and your mother have been in my thoughts.

Maeve, you lovely person, thank you for the kind words you always have for those who need them and looking out for the rest of us. Hopefully, I can deliver a hug in person in the near future.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 22 Aug 16 - 08:30 PM

I'm still here, too, quietly. Refresh!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Janie
Date: 20 Aug 16 - 06:16 PM

Have turned into a lurker but have not abandoned ship. Just haven't found words for a long time. Read nearly daily. All who post, know I'm sitting quietly in a hidden corner, watching, listening, caring....

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: maeve
Date: 20 Aug 16 - 05:40 PM

Oh, Mysha...Well done! You have accomplished so much for yourself and your mother! Thank you for telling us some of our thoughts and words were helpful. That's a gift you've given to us!

Those kind nurses might enjoy some chocolates or flowers or fruit.

Please tell us as little or as much of your journey with your mother as is useful to you. We're here listening and ready to encourage and support as well as we can... and we understand some things need a bit of privacy also. You could send a PM if that works better for you sometimes.

Maeve

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Mysha
Date: 20 Aug 16 - 04:43 PM

Thanks all,

For reminding me of a song I have behind me in the CD rack, for reminding me that others got through this as well and that I shouldn't burn myself up in the process, for all the good suggestions, simply for sympathising.

We have the music working; indeed the nurses were quite enthusiastic we do this, provided I supplied the equipment and CDs. Your words encouraged me to reach out a bit more, with several people telling me to ask for help the moment I need it. It has also helped me discussing details I was unsure of, some of which, it turned out, could easily be found out once I knew to ask about them.

It's not that I suddenly know where things are going, but it does feel like taking small steps does move you forward.

Thanks,
                                                                Mysha

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 20 Aug 16 - 02:58 PM

Wonderful words, m, and others. Nice tune, Rap. I was minded of The Rankin Family - We Rise Again but, alas, I could find no video of quality.

Bless all.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Pete from seven stars link
Date: 19 Aug 16 - 06:29 PM

Been away and catching up now. A few of us have been where you are now Mysha, and I have nothing more to add to the excellent comments above except my empathy and a prayer at this time. Bless you, and your mum.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: keberoxu
Date: 19 Aug 16 - 04:33 PM

Hope Rapparee's meeting went well,
and how is his better half recovering?

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Donuel
Date: 19 Aug 16 - 02:33 PM

imagine my delight at the gift of hearing that song for the first time in my life. thanks Rap

Take care of yourself
what does that even mean?

it means being selfish amidst all the mixed feelings and advice.
it means an unexpected treat or an unlikely event you will enjoy.

things are given to those who give but you have to allow time for yourself to accept what is given back to you.

PS guilt is usually a cruel self delusion.

good luck Mysha