Monday, 14 July 2008

C's world

C's world changes today. Everything and everyone he knows will change. My blond blue eyed little boy of mass destruction has grown into a handsome young man, is leaving school and moving into a home entering the adult university of life.


(You can click on the word cloud to create your own)
It amazes me where all the years have gone. My tiny little bundle of joy now towers over me. I had no clue when he was young what his future would hold. The old mental asylums were still open then, and have now thankfully mostly closed. Even our local day centre is closing and services are becoming more modernised.

There is a lot more choice now for homes for autistic adults because of The White Paper, Valuing People: A New Strategy for Learning Disability for the 21st Century. It is the first White Paper on learning disability for thirty years and sets out an 'ambitious and challenging programme of action for improving services.' Its about individual’s wishes, choices, rights and goals. (about time to!!) And I and other parents will hold them to it but it can still be a post-code lottery.
After all we may all end up in some sort of home one day.
Since the White Paper ive seen a mother get a council house for her son and use Direct Payments to fund staff to go in.
I’ve seen a group of parents get together and buy a house for their children who know each other so they can stay together with their peer group.
I’ve seen a house built from scratch to accommodate a persons specific needs.
I’ve seen individual flats, small homes and larger more specialist homes (as I have chosen for C)

There is more choice and I hope these choices continue to grow as autistic people are listened to more, and awareness grows. Care standards are much higher and homes are inspected regularly. The Government have also listened to the NAS and their I Exist campaign. But there is still much to be done and improved upon.

I found this poem written by Wendy Lawson which she gave me permission to use.

Change, change and more change,
Of context, place and time.
Why is it that life's transient stage,
Plays havoc with my mind?
You said,"We'll go to McDonald's"
But this was just a thought.
I was set for hours,
But the plan then came to naught.
My tears and confused frustration,
At plans that do not appear,
Are painful beyond recognition,
And push me deeper into fear.
How can life be so determined?
How can change be so complete?
With continuity there is no end
Security and trust are sweet.
So, who said that change would not hurt me?
Who said my 'being' could not be safe?
Change said,"You need continuity"
In order to find your place.
For change makes all things different, They no longer are the same.
What was it that you really meant?

All I feel is the pain.

It is hard to tell how much C understands. He became more distressed with each visit to the new home (but at least they have seen his head banging and how I handle him) Two staff from school will be staying over night with him tonight.

So as C moves and his anxiety takes over for the next few months, the only control he can exert in his new world are his bodily functions (in and out) and his head banging. I just hope his helmet does its job and he finds peace and trust soon. I hope it doesn't take C to long for him to train his staff! He certainly trained me well!

I don't know when i will see C next, i am being given conflicting advice how long i should leave him before i see him, so i will just play it by ear and go with my gut feelings.

123 comments:

belle said...

Thinking of you. Hope C settles really quickly. And thanks for the info re the white paper. I shall file it away for future use!

Cathy said...

Hugs.

I'm keeping everything crossed that the transition won't be too painful for either C or you. He will get there in the end and he might actually surprise you...sometimes the biggest changes seem to be easier than a disruption to daily routine, I find.

Cx

Chris H said...

I really hope C finds his new home not too threatening and he settles in a quick as he can. I too hope his helmet protects his poor head. And may you find this transition period not too hard either... hang in there .. he's going to be fine I'm sure, just as you are!

Suburbia said...

I like this thought:

"If we don't change, we don't grow. If we don't grow, we aren't really living."

Take care of yourself. I hope you see C soon and that all your changes will bring good and settled times in the future

Blossomcottage said...

I am with you all the way and thinking of you. I do hope all goes well and I am sure C will soon settle into his new home and way of life. He has been such a lucky youngman to have had you as his mother, his friend and his guardian.
Lots of Love Blossom

toady said...

Thinking of you. I'm sure it will work out.

Toady
XX

Niksmom said...

No great words of wisdom —I think that might be a bit like carrying coals to Newcastle —just wanted to let you know I'm thinking of you and C. Keeping fingers and toes crossed that things go as smoothly as possible for both of you as you embark upon this next phase of life. xo

The Dotterel said...

Is there any news? Has he settled? I feel sure your instincts will be fine!

Jen said...

Thinking of you- I hope that his transition is quick, and not too stressful for him. I'm glad that you got the new helmet!

And take care of yourself- I can imagine how much you'll be missing him.

All the best,

Jen

BenefitScroungingScum said...

Hugs for you, I will be thinking of you both and keeping my fingers crossed that C not only settles soon but is wonderfully happy in his new home. It must be life changing for you too, lots love, BG x

akakarma said...

I, as always, wish C. the best in his transition. I am also sending you lots of hugs and hopes that you are getting the support that you need since watching our children move forward and away in the process is a bittersweet thing to say the least!
I'm not sure if I could stay away either.

Beth said...

Yet another difficult change for you, as well. Bless you both. I hope it all goes well.

laughingwolf said...

bittersweet as it is, grats to him for 'graduating' to adulthood

and bless you for never abandoning your efforts to ensure his success, cas....

Bettina said...

I am so hoping that the he adapts sooner rather than later without too much stress, distress and head banging.

hugs

Maddy said...

I've heard quite a few broadcasts on 'insider views from Care homes' which are more than worrying / how many is enough staff despite the guidelines.

Like you I have no idea how long is long enough, so trust your gut seems the best practice in this situation.

Best wishes

Betsy said...

Best of luck and good wishes on this huge change in C's life. Praying for peace, happieness and lessened anxiety for him...and big hearts, understanding and wisdom for the staff. And you!....comfort and peace that you've done the right thing. :)

Jerry in Tampa said...

Casdok - what a big time for C and more worries for you... The poem is fantastic - we will be keeping you in our thoughts as the days go by....

Jerry in Tampa

Mrs. C said...

I have been thinking of you guys every day but not wanted to email because then it would be on your TO DO list and I don't want to make more on your plate.

BUT just wanted to let you know I've been prayin' for you and C every day. And the staff! And for your job search and for C to feel *safe.*

You are right that we ALL might wind up in a home someday. I'm so sad though that this lil boy wouldn't be able to visit you though. You'd better just stay well!

I wonder about all the history though that you've been through. Like, how did you figure out C was autistic? I mean, today it's obvious because they throw "the label" out so much, but when G was little he'd have SUCH OBVIOUS behaviours and the "experts" would tell me I need to discipline the kid more consistenly.

One recommended a good spank!! Do you wonder why autistics suffer abuse if this is what the experts say? To parents who are upset and bewildered in the first place????

OK, not to hijack your blog. I hope the food is to C's liking at the new place, too.

Not to be weird, but does the place *smell* funny? Because I hate hospital smell. Can you make it smell properly for him?

OK I'm going...

Crystal Jigsaw said...

You and C are in my thoughts. To not have an idea when you will next see him must be a strange experience for you.

Take care, CJ xx

Dianne said...

I think trusting your "gut" is a fine way to go! look how far your inner sense and strength have taken you so far!

If your hands are tingling a bit the next few days it's just me - giving them a firm squeeze and telling you how much I care.

Jayne said...

Hope C finds his comfort zone soon in his new home and is able to settle in.
((hugs))

Nancy said...

Sending good vibes to you and C. I hope he adjusts quickly and finds good days ahead for him.

Elizabethd said...

I can imagine how hard it is for you, having helped some of 'my' special needs childrens mothers cope with a move. Thinking of you all the way.

teeni said...

What a lovely poem. As much of those of us without autism have such issues with change, how much more so does someone like C? These changes must be hard for you as well since you don't know how C is going to react. I'm keeping you both in my thoughts and prayers. You are right to go with your gut on when to visit him next. I'm so glad you were able to find this school and that the staff will stay with him. Keep us posted.

Mary P Jones (MPJ) said...

I'm sending good thoughts to you and C. Best of luck with the transition.

Bad mommy said...

I will keep you and C in my prayers. Peace is an elusive one! But I hope that the new living situation will feel comfortable and safe to him very, very soon.

If only doing the right thing were occasionally easy! Best wishes.

Angela said...

Thank you for the update...I have been wondering how you and C were adjusting!

Mima said...

Gosh finally the time has come where C goes off to his new home, it will be a huge change not just for him, but for you too. I really hope that he settles well, and that things go as smoothly as they possibly can, and I hope that you are ok too. We are all thinking of you both.

Tanya Brown said...

I'm wishing the best for you and C. I know that this has to be a bewildering time for C, but given time, kindness and consistency, he will adjust.

As for when to go see him again, do trust your gut. You know him better than anyone.

Ron said...

Morning Dear Casdok!

I so enjoyed the poem that you shared here with us.

Oh my...CHANGE.

There's a part of me that actually craves it...and another part of me that is so afraid of it.

For me, it's the "uncertainty" of what lies ahead.

And also the fact, that I don't like my routine disrupted.

But how can things change, unless my routine IS disrupted?

Oy Vey!?

It's so great to hear that awareness is growing and that there are organizations who are working to give more choices for those with autism.

I know this transition for both you and C must be a lot to move through right now.

And you're right...following your gut feelings. They'll always lead you.

Please know that I'm sharing much good energy and love with you both!

It's always great talking to you, dear lady!

Have a wonderful week!

Bobbi said...

That must be so hard. I'll keep you both in my prayers. ((hugs))

Cheri said...

It won't be long now till C settles in. With any luck, this will be the last move C has to make, and his life will be more predictable and safe to him (and you).

And you know C better than anyone. Don't let anyone tell you when you should see him. You know.

Akelamalu said...

This must be so difficult for you and C, I feel for you. I'm sending Reiki to C and the situation in general, I hope he settles soon.

Ian Lidster said...

May it all go well for you both. My heart goes out to you.

Trixie said...

Good luck to C in his new surroundings. I'm fusre it will all work out for the best! x

kristi said...

I am hoping he does better than expected. I am thinking of you in this tough time.

J said...

Wow, you have spent soo long preparing for this day and now it is here. I can 'feel' the anxiety (of son and mom) all the way from mid-Michigan, and can emphasize with the two of you to a certain extent. Change can be so difficult. As for when to visit, I'm sure your mother's intuition will kick in. Will be thinking of you and C. Best wishes--jml

Hammer said...

I send my best wishes to you and your family.

Anonymous said...

Wishing the best for both you and C!

Patrick

Flea said...

Been checking you regularly, but I disappear on the weekends. Thanks for popping in!

So glad you're trusting your gut. I'm sure it's gotten you through so much already and is trustworthy. meaning it's also what's brought C to this place and your trust in the home and staff. I hope it all goes really well.

Marla said...

Following your gut is probably the best way. You will know when you need to go visit. I really hope C is happy and the transition goes smoothly.

Rosie said...

It must be hard to let go. My thoughts are with you, hoping he settles in well

Frances said...

You and C are both amazing people, and I send lots of love and good wishes and hopes to you.

xo

Cyndi said...

Sending you lots of bigs hugs. Keep us posted!

ChainingMagic said...

Thank you for your encouragement Casdok! Things are changing for the better, the boys do feel better about things...

I am praying for you and C! Hope everything smooths itself out, sooner rather than later. :o)

Eileen said...

I am hoping that C's transition into his new home goes smoothly, and that he adapts quickly. I also hope that the anxiety you feel inside, will improve with each day. I think trusting your gut is the way to go when deciding about visiting. Your instincts are the best way to go.

This most be so hard, to see your beautiful boy, move to this next stage. The good feelings you have about the staff, will be so comforting.

Please keep us updated. You and C have been in my thoughts...so much. I love Wendy's poem, it says it all.

Take care of yourself.

XOXOX

Joker The Lurcher said...

i so hope things settle down quickly for C and that you can visit soon. it must be so hard for you both. hugs.

Debstar said...

I can only imagine how difficult this must be for both of you. Hope he settles in sooner rather than later.

Honeysuckle said...

I do hope C loves his new place (once he gets used to it!) and that you don't find the time until you're allowed to see him again too painful. We were told a fortnight settling in time with no visits is standard but I don't know if that's the same for those with autism.

WesterWitch/Headmistress said...

Hugs to you both.

the mother of this lot said...

Well, your gut feeling hasn't failed you yet, so I'd stick with that!

Hope C settles in soon and that you both have some peace of mind.

Mrs. C said...

:] put an award for you on my blog.

Bonnie D. said...

I will be thinking of you and C. I pray that all goes well for and him. Your post just made me so sad. I feel for you and it seems a lot of others do too. You know you will know when it's been long enough, probably till you can't stand it anymore! Good luck with the transition.

Lisa~The Stimming Spot said...

oh bless you and C during this time of change!

leslie said...

Praying that things will go smoothly and C will adjust quickly. Then you will be comforted in the knowledge that he is safe and well taken care of. I cannot imagine the anxiety you yourself are under! Take care.

TraceyTreasure said...

Thanks for stopping by! I have thought about you often lately. I have to ditto the last three lines of the poem.
"For change makes all things different, They no longer are the same.
What was it that you really meant?
All I feel is the pain."

I hate change! When things change I have a hard time adjusting. We are going through some changes too.

I feel for you and C. Please know that change is usually for the better even if you don't feel it for a year or so. Sending you both big hugs and love, T

LceeL said...

A time of change for him. Bewildering, at first. A time of accommodating and adjusting and learning how to exist in new circumstances.

A time of change for you, too.

(*HUG*)

Cait O'Connor said...

Thinking of you at this time of change and hoping all goes well, (I'm sure it will.

citizen of the world said...

There really have been some remarkable advances - you are so right that it's good that the old asylums are gone. When my son had to have brain surgery and I was scared, I reminded myself that 50 years ago, he would probably have died. I wish C a good transition, and you peace in the knowledge that they are learning new things all the time.

Deb said...

Good luck. It was awful when Katie moved out. It's taken me until now, about six months to start to feel normal again. I think Katie managed it quicker than I did.

It will work. It will take time and it will be stressful but it will work. My thoughts are with you. Take care.

Stimey said...

Good luck to you both. I hope it goes as easily as it can. Thinking of you.

Sandpiper (Lin) said...

This must be so hard on you. I hope C will adjust quickly and come to enjoy the changes in his life. You too. ((Hugs))

Seen This Scene That said...

Choices have grown as more people like you do a fantastic job to highlight current issues. Despite the difficulties, you've grown over these decades and coped well. Well done and take care!

Bonnie said...

Hugs, hugs, and more hugs! Both you and C are in my thoughts and prayers.

Kittymama said...

Sending you love and light from my side of the world, dear friend. May this transition open a new world for C, and also for you. Both of you are always in my prayers. God bless!

CrackerLilo said...

I don't know what to say to you except good luck, good luck, good luck to you both!!!

I'm sure this will ultimately be good for you both.

lime said...

oh goodness, such a massive transition. i do hope it is comfort that you feel comfortable with the staff and that the new helmet keeps C safe. indeed, you go with your gut. no one knows C like you do. i wish you all peace in the transition.

alan said...

May you both settle into this new life as easily as possible!

Odd I would make it here to find this post as I've been settling into a new life myself, though not nearly so challenging!

My oldest has been working with a class of Asperger's children this summer, and has loved every minute he's spent with the kids. The bureaucracy gets to him, but so far he's still enjoying the work. He spent last year substituting in different schools and was upset at how many kids he found being labeled as "developmentally disabled" because no one wanted to take the time to teach them something that put them behind from that point on, not only ruining their lives but taking resources away from the children who need them.

Perhaps at some point America will be begin to see the example being set there and follow suit; I hope it's soon!

alan

whimsical brainpan said...

I wish you both all the best in this stressful time. C is certainly lucky to live in this day and age and to have you as his mother.

MMC said...

Casdock, I am sure this is really hard for you as you know how hard it will be for C. But you've done a great job so far and as hard as change can be (great poem BTW!), we can only hope that at the end of the day it will work out for the best.
((((Casdock and C))))

Jocelyn said...

I can only imagine the mixture of emotions you're feeling--it's a big step, one that could go many directions. I hope this change, once things settle, gives C the chance to reach that next step.

vivavavoom said...

yes, trust your gut...you are an amazing mom!!

hope you will also be okay with this big change in your life!

Nea said...

Thinking of you both.

autismfamily said...

I wish your son luck in the coming months as he makes this transition. Must be hard for you at this point in time starting a new chapter in your life as well.

I like the idea of parents buying a house together and having a community within the neighborhood to look out for the young adults. I like your banners and will have to look for them. I am starting out with the blog thing since my other site has no options for comments - http://autismspectrumdisorders.bellaonline.com

Anne said...

Thanks for visiting my blog. My son is 5 years behind yours so I don't have to worry about his placement now. But time flies and it'll be sooner rather than later.

Blessings on you both.

Working mum said...

I am thinking about you and C and I hope he settles in to his new home quickly and that you adjust to this new phase of life. WM x

MamaGeek said...

Thinking of you. And definitely go with your gut!

Trish (wheresthebox) said...

I have been thinking about you and C all week and am hoping that the adjustment is going well. I try not to think that far into the future myself - it's all I can do to handle the challenges that arise now.

I definitely agree that you have to listen to your gut and do what you think is right. And keep taking care of yourself.

Jade said...

It wonderful to see how much others are supporting you and C on blogger! Beautiful! My prayers and thoughts are with you and C during these anxiety provoking times. You are both so very strong and will get through this successfully and with love for each other.

little wanderer said...

thinking of you both and hope that you are ok x x

Life as the mother of 4 said...

I know I'm already thinking (worrying) about group homes even though Will is only 9. Best of luck!

motherx said...

Good luck to C. I can only imagine how you both must be feeling. Change is never easy and of course our children will always find it 100 times harder than anyone else. I dread the day that I am in the same situation and find that it gives me nightmares already!! even though I still have a way to go. Hope it goes ok.

Deb said...

I thought of you and your son today. I was teaching a class on Autism, and one of the students said they liked the puzzle icon. I shared C's thoughts about not being a puzzle piece that has to fit. Each of the students eyes widened in recognition. It was a great moment.

Mrs. Darling said...

Oh I just cant imagine how you msut feel. Its such a happy/sad time all at once. I do hope he adjusts alright. I'm amazed at how strong you are being!

Ellee Seymour said...

Casdok, I do feel for you. I know you wouldn't have left him anywhere that you didn't think was suitable. Thinking of you and C.

John-Michael said...

In the midst of emotional maelstroms of conflicting Hope, Doubt, Anxiety, Fear, and Anticipation, I do sincerely pray that You attend to that other of your completely appropriate responsibilities. That marvelous Gift from Life ... your Self. In all respect and with loving concern, I humbly ask that you attend to those needs and necessities for your personal comfort and care. Lest you do your Self the disservice of neglect. That would be painfully regrettable.

With loving and respectful care ...

Donetta said...

Hello, Thanks for stopping by.
I am holding you in my thoughts and prayers. This is also a huge change for you. Have you the support for the changes you have before you? I now that you have set everything into motion for him. Now how about your changes? Be embraced and be courageous as you face YOUR new world without his care being the center of every moment.
I am so glad times have changed here and where you are. There are so many places around this globe that have not.
We are truly blessed are we not :)

blogthatmama said...

Lots of luck to you and C blogthatmamax

E said...

This made me cry. You have a way of doing that. But there is joy here too. You have prepared for this and you know that you are making the best choice you can. You brave brave girl.
Keep busy. I worry more about you in this than C. Our kids have a way of managing their transitions better than we do....
You are an inspriation. If you can do this I should surley be able to manage my own transitions better

captain corky said...

I hope C settles in quickly and it's so good to hear that he has a place like this to go to instead of a lousy asylum.

Joeymom said...

Wow, hope he settles in soon and you can go give him lots of Mom-time! Do keep us posted!

La La said...

Thinking of you and hoping for a smooth and quick transition for you both. Thanks for the update.

Blessings.

buffalodickdy said...

Big steps, but all parents reach that time when they must let the children move to the phase. Yours was much more intense than mine, I'm sure- I wish you both well during these next few months..

bobbie said...

this day has been a long time coming. I feel for you, knowing the anxiety you must feel. My prayers are with you and with your son.

Sally's Chateau said...

As the Mother of a 19 year old son your posts never fail to move me. Love to you both. x

Angela said...

I do hope things go well at his new home.
Keep us updated.
I would say try not to worry too much but I am sure you do a bit

The Dotterel said...

Your site never fails to be an inspiration! So please pop over to my blog and accept a small token of appreciation from me.

KAREN said...

I hope the transition is going well. A strange time all round.

Great poem, my friend is a fan of Wendy Lawson (we went to see her speak a couple of years ago) so I'm going to pass this over. My friend's daughter has just been accepted onto a residential scheme funded by the local council, to give her a break a couple of nights a week...she's had to fight long and hard for it, but it's good to know they've listened.

alan said...

Thinking of you...

alan

Kerith Collins said...

i think everything will turn out find for C and his staff
kerith

Kelley said...

Wow. It is really happening isn't it babe?

I am scared and excited for you. Please, please keep us updated on how he is going, good and bad.

Or email me.

You are my future. I feel our connection.

LceeL said...

Casdok, is everything going okay with C? Is he adjusting? And are YOU okay?

Suzanne said...

God bless you and C.

Motherhood for Dummies said...

I hope that C adjusted well and that you are feeling good about it.

E said...

How are you shrekmommy? You and C have been on my heart...

david mcmahon said...

God bless you both - a simple and sincere wish.

Have been AWOL as I was away in Malaysia.

Melissa said...

Thinking of you and C!

Casdok said...

E
Im better than i was last week!
Am going to visit C tomorrow, so i think i will feel better when i have seen him, if i dont upset and confuse him to much that i am not taking him home.
Its tough being a mum at times.

Maggie May said...

This must be an awful time of adjusting for you both.It will take time for C to get used to things but I'm sure he will go on to live a more independent life.
Not sure if you will have read that my 12 yr old grandson is waiting to be tested for autism as he is struggling at secondary school & have been referred by the school.
He has obviously slipped through the net until now but I have often wondered.................

mumkeepingsane said...

Wow, big step. I'm definately thinking of you and C as you go through this difficult (but hopefully positive) transition. Hugs.

BoufMom9 said...

Wow! That is a huge step! I will be thinking of you.
My younger brother Ricky has just one year left of schooling before he will be getting "placed" as well. There is actually a really nice home around the block from my house that my parents are trying to get him in. It would be a huge comfort to them.
I wish C all the luck in the world.

DJ Kirkby said...

Sending you a big Aspie hug. If it all gets too much and you need ot escape somewhere then please come visit us. Thinking of C too, hope he is managing to enjoy himself. I love Wendy Lawson's poems, they are magic.

Suzy said...

Change is difficult, but many times rewarding.

I am sure that C will find his new life safe and loving. You have raised him well and oh so lovingly.

The best to you always.

Suzy

FXSmom said...

I like the idea of parents buying a home for their kids. I'm moving to an area that has many more families with children like ours and I like the different options that can be available.

Mrs. C said...

:] hope the visit went well, casdok!!!

Casdok said...

:(

CrazyCath said...

I wish you and C the very best. You "sound" exhausted.

You have done so much to highlight the issues involved and done so much good work, I only hope that C settles quickly.

As for when to see him again? He's your son. You know when. :0) (((hugs)))

Angie said...

Thinking of you and C. and hoping all is going well for you both.

Jen P said...

Checking in to see how you're doing. You're in my thoughts and prayers and look forward to an update.

Dad Stuff said...

Keep your spirits up. You've made C into a strong young man. I'm positive he will find a way to work things out.
Thinking of both of you.

JUST A MOM said...

yep late again just stopping by and letting you know you and C are in my thoughts....

E said...

I can hardly stand this waiting. I hope you guys are okay. Long hot baths and stay busy. You are both in my thoughts....

Jen said...

Something else to think about sweetheart...a food post! (http://chaosandjoy.blogspot.com/2008/09/omnivores-100-mmmm-food-post-for-friday.html)

I hope you know that I'm thinking about you- Dylan's been through a lot of changes in his house recently (as we've been through here), but last night he came for a visit and for the first time ever just wanted me to sit on the couch with him and hold his hand. I've never had anything approaching that before from him. I'm thrilled, and at the same time heartbroken because it won't happen again for at least 6 more days. (We're in the middle of "discussions" with our house about a number of things, including visits. Wish us luck, because it's going to be an interesting (and hopefully positive) couple of months.

o in the meantime I'm going to think about food :-)