Sunday, 27 September 2009

Celebrating 21 years!

I want to bounce into C’s room singing ‘happy birthday’ giving him a big hug and showering him with kisses and presents. But I know what would happen if I did. And it is not about me.

So I walk into C’s room, he spies me with his peripheral vision. And then he looks at me, head tilted upside down, fingers pressed into the corner of his eyes. C hums loudly to drown out anything I might say. So I whisper in short sentences not directed at him but to the birthday present I am holding. His humming becomes quieter as if he is straining to hear what I am describing. I don’t give C the present as I know he will push it away so I open it and leave it in his room for him to look at in his own time. But I know he won’t touch it, he hardly ever touches anything, his fingers are glued in his ears.

C doesn't want for much, I have to be inventive. So apart from a few presents I give him experiences – memories.
Because of C's love of loud music we went to see We Will Rock You.
And for his love of travelling fast and in straight lines we went on a speed boat trip on the Thames.

I could not blog without mentioning the dehumanizing (on so many levels to both Autistic people and parents) Autism Speaks video. But I have been finding it hard to put into words how it has made me feel as a parent of a young man who is 'low functioning' (I hate that term as C 'functions' as best he can) Even though C does not speak - with patience and understanding I learnt to listen to him.
His first school would not listen to him so I fought for one that did. His first group home did not listen to him so I found one that does. All without voodoo or fighting a disease – but fighting a system and by doing so I hope we have educated a few people along the way in their attitudes and listening skills.

By accepting C's Autism and working hard to help him I am not a warrior, or victim or hero. I am a mum who listens to my sons needs - it is C who has had to do the real hard work every day.

So don’t listen to Autism Speaks and their negative stereotypes.
(Excuse me while I have a C moment humming loudly with fingers in my ears)

With the right attitude and support and understanding children like C grow into adults who do have a good quality of life.
My son was not robbed from me and nor were my dreams.
I still want for C what any mother wants - for him to be happy healthy and fulfilled without pity and prejudice to reach his full potential.
We are hopefully on the right track.

Happy birthday C! I did manage to get 1 kiss in! You have taught me so much. I am so very proud. May you carry on touching peoples lives. Diversity makes the world a better place and love makes us stronger.

102 comments:

feebeeglee said...

Happy Birthday C. You guys are so incredibly blessed by each other.

I have to say it has *never* occurred to me that Bede's humming might sometimes be to drown the lot of us out! C doesn't speak our language, but you sure speak C's.

Bede has an identical keening squeaky moaney hum (to C's) when he is happy or upset. I can tell the difference between those about 90% of the time.

You give the best presents. All flesh is grass, and whatever "things" you get him would be dust sooner or later. But the memories will be there always.

Maggie May said...

Happy Birthday, C. You are really blessed to have a mother like yours.

Yes, you are the perfect Mum for C. You do a great job thinking out the best things for him and I know you receive so much in return.

Moving post.

deb said...

I didn't like the video, it had a few good points but it made autism into a monster, which it's not. I think autism is just a part of the spectrum of being human. I think the real problem with autism and disabilities in general, is how the public treats those with autism and other disabilities.

Happy Birthday to C. He has a lovely smile.

HelenMHunt said...

That's a beautiful post. Happy Birthday C and so much love to both of you.

DOT said...

Happy Birthday to C - big day!

bobbie said...

Happy Birthday, C !
Your best gift of all is your Mum. She's a real winner.

I haven't watched the video. I'm not sure I even want to. You know your son and have done everything you possibly could to meet his needs and make him happy. That is all that matters. And he is the man he is meant to be, and you should be proud.

Akelamalu said...

Happy Birthday to C.

What a lovely post and that last photograph is just beautiful. :)

Green-Eyed Momster said...

Happy Birthday C!

Casdok, you are the best Mom in the world for him! I love that picture of you kissing him. His smile is priceless!

Hugs and love for you both!

Niksmom said...

It's C's birthday but WE got a gift of your sharing with us. This is, to me, a perfect response to the AS video. And the last photo is so lovely!

Wishing both you and C the very best.

Anne Brooke said...

Happy birthday to C - may it be a truly special day for you both!

Axxxxx

Stimey said...

This is a beautiful post. What a wonderful response to the AS video.

And that last photo! Gorgeous! Happy birthday to C!

Hilary said...

Happy birthday to C! Sometimes I think Birthdays are more for us parents. I love the pictures and the descriptions. You are so awesome.

VAB said...

What a great picture! Happy birthday, C.

starrlife said...

Oh what a happy glow and I don't mean the candles~ Happy Birthday C.- and Casdok too, who birthed him! The world is a better place with the two of you in it!
I haven't seen the vid but I can imagine it is alot like the things folks say about Down Syndrome. Well, we all can say differently- the world needs all kinds of people to keep it healthy and happy!

JoyMama said...

Happy birthday, C!

You and your mother both make the world a brighter and more fascinating place.

I agree with Niksmom -- what a lovely gift. To us.

jess wilson said...

i adore the way you love him - the way every gift (from the tangible, touchable to the experiential) are so perfectly in tune with him. 'it's not about me' - a lesson so many of us could bear to be reminded of over and over again. it's as beautiful as his smile in that last photo.

happy birthday c, and love to you, mum.

Kit Courteney said...

I've learnt so much from reading your blog over the last year or so. I believe that before I would have looked at that video and felt only fear at the 'autism monster'.

However, when you posted the link on Facebook I was horrified at what it was saying! The negativity of their words was shocking.

I believe that you do a FAR better job at telling it like it is - good and bad times included - than that video by Autism Speaks... but then you probably knew that! ;0)

Rosie said...

happy birthday C...and thanks for those links that give me those helpful hints in my daily dealings. At our school there is a lot of insistence on eye contact so I was interested to read the peripheral vision link...

menopausaloldbag (MOB) said...

Happy birthday to your handsome son. Your post made quite emotional. You write so beautifully about a tough subject and your love as a mother shines through. Keep educating the ignorant and those of us who need to be reminded that your son is a young man with a syndrome and that he is not defined by it. Too many labels used to define people and that is all people see sometimes. You are amazing, no matter how you see yourself.

rainbowmummy said...

Perfect post. I hope when Egg is 21 I can advocate the way you do! Amazing. Awesome mother. I love the start, so true, how much stuff is actually for the benefit of the parents. Hmmm. Happiness really is wonderful. XX

SB said...

Happy Birthday C!! All the way from Virginia...

I think you're amazing for being a rebel. Speak for yourself! DOn't let others speak for you! Right on!!

Corrie Howe said...

Happy Birthday! Congratulations. I love the pictures. A ride on the Thames would be a great present for me. I like the fact you gave him memories. I love the cakes.

Suburbia said...

Happy Birthday C.

What a brilliant photo of you both :)

Petunia said...

Happy birthday C! Fabulous picture of you both. I love reading your blog as I come away feeling positive about what life may hold in store for Munchkin. xxx

Kahless said...

Happy Birthday C.

Rachel said...

I just happened on your site today, and I found this beautiful post. It was just the medicine I needed. I'm a 51-year-old autistic woman, and I suffer far more from the ignorance and indifference of the world than I do from autism. (I also wear earplugs and a noise-blocking headset when I do errands because I have difficulty processing verbal communication--it exhausts me quickly--so I can totally understand C's sticking his fingers in his ears and humming!)

I am diagnosed as high-functioning, but I think those HFA/LFA labels are a crock. I need assistance with a world of activities, just as C does. I'm able to pretend to be "normal," but most people aren't fooled and I'm sick of doing it anyway.

Thanks for an awesome site. And thanks, too, for mentioning the latest piece of insufferable garbage from Autism Sucks, I mean Speaks. I don't have the stomach to watch these things anymore, but I'm glad that others are standing up to it.

Happy Birthday, C! And Happy C's Birthday to C's Incredible Mom!

Robert said...

I have had to fight for everything that my son (another C) has, so I know exactly where you're coming from.

And like you, I just want the best possible life for my son - exactly the same as what I want for his siblings.

Tanya @ TeenAutism said...

Wishing C a most wonderful birthday! I'm so glad you're able to experience the things with him that he enjoys. And thank you, thank you for reminding us "It's not about me." We parents need to remember that while we are listening to our children, and learning from them.

mumkeepingsane said...

Look at that smile! Yay, you got a kiss. Happy Birthday C!

Club 166 said...

Happy Birthday, C!!!

Casdok, this is just a beautiful gem of a post. Your gifts were perfect (if I ever get to London, I also want to go on the speedboat on the Thames).

Joe

Warty Mammal said...

What a great photo of the two of you smooching!

Happy birthday to your young man!

Julie L. said...

Beautiful post with wonderful pics! Great memories do make for wonderful gifts. Looks like you both have some fantastic ones from his 21st b-day : ) I

It's too bad about the Autism Speaks video. The negativity conveyed was stomache churning. They could do much better, positive things with all the money they have...

Cheri said...

Happy Birthday C!

Well said Casdok. I have always thought that video has and will only do more harm than good.

Queenbuv3 said...

Happy Birthday C!!

Thank you for mentioning the horrible new video from Autism Speaks. I was only able to watch half of it before I became too disgusted to continue.

I haven't blogged much lately and that video has given me inspiration to continue. There aren't enough of us coming forward and presenting a positive view of life with a child with Autism. I need to keep coming forward and showing my experiences as a mom who loves and accepts my son with Autism.

Thank you for being one of those voices that is showing the world that people with Autism are PEOPLE and deserve to be the best they are able to be with support and love.

Kudos to you for being a strong advocate and loving mom to your son!!

Caroline said...

A very beautiful and insightful post - Happy Birthday C x

Paulene Angela said...

Firstly Happy 21st for C. What a start, a new home, a speed boat trip, going to see We Will Rock You and a beautiful Birthday cake and presents.

I always seem to catch up on the Autism news with your interesting posts. This is the first time I have seen the Autism Speaks video. I need to watch it again to see where they are going!?

I love your trueful words "You have taught me so much".

I have a quotation on one of my blogs by Angela Schwindt

While we try to teach
our children all about life,
our children teach us
what life is all about.

frogpondsrock said...

Happy birthday to C and I would like to say thank you to you for sharing parts of your and C's life. I have learned a lot from you both. Thankyou

frogpondsrock said...

Oh and I forgot to say Great photos. and I am thrilled that you got a kiss and C looks so Happy (YAY)

lisadom said...

That is hilarious Cas: I think there is a whole board of management at that particular organisation that puts their fingers in their ears and hums whenever a proud parent or a self advocate tells them they have the message wrong.
I got all my Board at the IAA to listen last week (had to use a few key words directed at other things while they listened peripherally) but they got it and sent off a quick note asking WTF? but in diplomatic terms.

I love that you count C's experiences as the best presents. We have the same issues with Bratty, but she gets a lot of our time. Whereas Boo is on constant reward manipulation programs so it is hard to justify a random present just for "Being born" when you know you could get him to put his shirt on frontways with a smaller present each day.

You are the biggest gift in C's life and a gift to all of us. I think when he went shopping for life, he chose the perfect mum. xx

A. said...

Happy Birthday to C. Briliant photo.
And brilliant post :0)

A BCPSS Parent said...

What a beautiful post and what a great birthday! Thanks for taking the time to share with us. Best wishes to C.

Dr. Deb said...

Happy

Birthday!!





Love the photos!!

jazzygal said...

A very big Happy Birthday to C from me too!

Lovely post and well said.
What a lovely thought..... giving memories. I think a lot about that too.

I so want to see We Will Rock You!!! It's coming to Ireland (Touring Company) in January. Might bring WiiBoy! xx Jazzy

Ron said...

HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY DEAR C!
HAPPY BIRTHDAY TOOOO YOOOOOU!

applause...applause...applause!

Oh dear Casdok, you are such an inspiration to all of us.

Diversity makes the world a better place and love makes us stronger.

You are so right!

Bless you Casdok. It's an honor to know you.

Love to both and C!

XX

mommy~dearest said...

Oh happy, happy, birthday, C! Casdok- I LOVE that pic of the two of you! Totally gave me goosebumps!

LceeL said...

My son and I got to see "We Will Rock You" when we were in London a year and a half ago. What a GREAT show. I hope C enjoyed it as much as we did. Happy Birthday, son. Your Momma loves you - as do many of us.

Green Girl in Wisconsin said...

MANY happy returns--to both you and C. Your blog has accomplished your goal with me--I look at this issue SO much differently now.

kathleen said...

"I give him experiences-memories"
That is just one of the best things I've heard today..one of the best gifts to give..and be given. Happy 21st birthday to your young man! How exciting..how fast they grow..my oldest will be 11 on Friday..still don't know how that happened!

The Green Stone Woman said...

Congratulations with your son's birthday. I hope he was happy with the cake with candles on it.

You sure are one heck of a human being. I have a lot of admiration for you. Many people would not go to the lengths that you do. I think it's just great and I learn a lot from you.

Hugs,
Irene

therocchronicles said...

Happy Birthday to C! I love that you give him experiences instead of stuff! That picture is wonderful.

I've just started reading your blog and you do a great job! Thanks for the reminder that it's not about me - I need to be reminded of that when I get down about the diagnosis.

I haven't been able to watch the new AS video. I stopped looking at their site right after we received the diagnosis - the messages boards were just full of nastiness. I couldn't believe the way parents were treating each other on what was supposed to be a supportive website.

Debs said...

Happy 21st Birthday, C.

Love and hugs to you both.

I love the photo of you both. Your love shines through it. x

Jorgo said...

Ta Cas - you have done it again!

Courage with perseverance and humour!!

More power to you both and "HAPPY BIRTHDAY C!"

Chris H said...

I thought the video was good! But maybe I looked at it from a different perspective, not being a parent of an autistic child.
HAPPY BIRTHDAY to C.... I hope he had a lovely day.

motherx said...

Hope he had a wonderful day. Cakes were fantastic and very much enjoyed by boys:)

Dianne said...

I never realized how awful Autism Speaks is, and I'm sorry I was so dense

I saw that video at Mrs C's place and I thought of how I would feel if they were supposedly advocating for my son and I got really angry

there is so much to learn

you and C are great teachers
about love
about family
about patience
and perserverance

Happy Birthday Dear C!!

nitebyrd said...

Happy Belated Birthday to C! He got the most wonderful gift by having you as his mother.

Beth said...

A belated Happy Birthday to C - and blessings to his proud mother!

3laine said...

Beautiful post, Casdok! Very well said after the making of "that" video. You describe the realities of autism more realistically than anyone.
C is very lucky to have you as his mum! Undoubtedly the two of you have had some very special times together. Wishing C a belated very happy birthday! xx 3laine

Indigo said...

I totally agree with nitebyrd ~ the best gift he has is his mum..Priceless! Happy belated Birthday C. ~x~

laughingwolf said...

belated birthday greets, c!

...finally online again

B1L said...

I disagree with just one thing you said. You ARE a hero. You are a hero to moms like me who are struggling with the possibility that their son might have autism. I love this post and how you explain your feelings about the autismspeaks ad. You have put into words things that I wish to say, and you have put into perspective things I needed to hear.

Thank you for that. For being honest about your struggles, but for not feeling sorry for yourself either. For appreciating your son for who he is. Because I needed to be reminded of what you said, which is "this isn't about me. It's about him"

Thanks!

Honeysuckle said...

Happy Birthday to C! That's such a lovely picture - you both look really happy.

buffalodick said...

You are a wonderful, and special woman. You have devoted most of your life to your son, as is clearly apparent you love him deeply. The sadness I feel is for you, not him- you have given far beyond this world's expectations.. but what about you? Tell me you receive as much as you give, and I will feel you are doing what you wish to do, and worry no more... How kind you are..

Marita said...

Happy Birthday C.

Thank you for all you have both taught me through this blog.

Crystal Jigsaw said...

You do it everytime! Bringing tears to my eyes with your beautiful pictures should be something I have come to expect now, but I was still taken aback by this gorgeous photograph. You are amazing people, both of you. The smile on C's face is a credit to you, his love for you shines through. What an incredible mother you are. And a very good friend.

CJ xx

p.s. delish cupcakes!!

Anna said...

You are such a great mother! Happy Birthday C!

Anonymous said...

I don't see how you do it.
Your son won't look directly at you and he always had his fingers in his ears?!!???
Autism is awful. C. deserves a better life and so do the thousands of other people like him. say all you want about it being natural for him to be the way he is and how there's no need for a cure but to someone on the outside looking in with a son who is almost C's age who goes to college and has friends and who is independent and active in the world I say that autism is awful.

Dave Coulter said...

What a lovely post, Casdok. Happy Birthday - to you both - and MANY happy returns of the day!

Dave Coulter said...

Oh, and please count me as one of the people you have educated along the way :)

StatMama said...

I love the photo!
Excellent post (as always).

HAPPY BIRTHDAY, C!

Ellee Seymour said...

Happy birthday C. You made it such a special day for him and I liked the throughtful ways you came up with treats he would enjoy.

Jocelyn said...

You have made me cry. I'm sitting here, listening to a really beautiful song by The Jayhawks called "Break in the Clouds," and the chorus goes "every time I see your face/it's like cool, cool water running down my back"--and so I was listening and reading, and then I got to the closing picture, and I am now a wreck.

In the best possible way.

kyra said...

happy birthday to C!!!!

i absolutely love love love this post!!!

yes. i will hum loudly with fingers in my ears every time anyone mentions THAT video.

lime said...

happy belated birthday to c. what lovely gifts you have given him and i surely don't limit that to whatever was inside the box but rather all the things you do "outside the box" that benefit c, yourself, and others who are in similar situations.

Jayne said...

Happy birthday, C!
What a beautiful young man you've grown into!

Goldie said...

happy birthday C!!!! You are very lucky to have such a kind, insightful mother.

wonderful post. really made me think. you always express yourself so well. your last paragraph especially spoke to me.

oh, and thanks for mentioning the boat ride and the "moving fast in straight lines" thing. My Percy does that and I was wondering if anyone else did too.

DJ Kirkby said...

Happy birthday C! I love how you described giving him his present, beautiful approach. And, that photo at the end, I love looking at it so much, C's face is a picture of joy.

The Dotterel said...

Your final sentence says it all Jen....and (belated) happy birthday C!

Shrinky said...

Happy birthday c!

M said...

I adore you. That last pic made me cry. What a blessed family you have on both ends. You understand, accept, and love your child for who HE is and adapt yourself to that. Isn't that what we all should be doing?

And I hadn't seen that autism speaks video before but, um, wow. I'm really disgusted. I'd been on the fence before regarding them but now? I have no doubt of my opinion.

I appreciate your honesty and truthfulness and realness. It means so very much to so very many people and most of all? For C. He deserves you to share the truth without shame or embarrassment and you do so and better yet? You do it with PRIDE. <3

Angela said...

Happy birthday to C and you

Mama Zen said...

Happy Birthday to C!

Mama Zen said...

Ooops! I also wanted to say that that's a marvelous picture!

Cheryl said...

Happy Birthday C! what a wonderful picture. Your so right about diversity making the world a better place, we learn from each other. Lets hope people start taking the time to really listen to the lessons C has been teaching all along.
XXXXXX

Mistress B said...

Happy Birthday C!!!

When are people going to understand that children with autism are still just children. hugs

lonestar said...

Happy Birthday C!!

What a beautiful post, I love what you said about C and being his mother. How blessed you both are to have each other!

Jen said...

Happy Birthday C! We've got the kids' 14th birthday on Friday...it's hard to believe how quickly time flies!

I'm glad that you got a kiss...this birthday I will settle for not getting punched :-)

Billy said...

Congratulations!!! (And I've missed your blog!!!)

therextras said...

Celebrating his life with you, virtually. Barbara

Working Mum said...

Wise words. You are indeed educating us readers about autism. Autism speaks would do well to use some of your posts to illustrate the realities of the life of a child on the Autistic Spectrum and their families.

Happy Birthday C (and what a wonderful picture of the two of you!)

Carolyn said...

Boy, does this hit home. Lovely, lovely post. I agree with you ... so much in life is truly about attitude. I'm completely inspired. Thank you.

KWombles said...

Happy Birthday, C! :-) You've managed so well, Casdok, to find what really matters and to take the joy and make it wherever you can. He is a beautiful young man.

STARGATE_3000 said...

WOW WONDERFUL PICTURE THE LORD BLESS YOU !!!!!!

vivavavoom said...

HAPPY BIRHTDAY C!!!!!!!!!!!And Congratulations to you too Mom!! Great picture. And those towering cupcakes look amazing. yum!!!!!

Rebel Mother said...

I thought I had already commented on this! But I'm not here.

Happy belated Birthday to C!

Hope you had a fantastic 21st.

All those cakes! Fabulous!

RMxx

Marla said...

Happy Birthday C! It is wonderful to be back and catching up. I love love love the picture of you and C here with the cup cakes. Beautiful.

Herrad said...

Hi Casdok,
Have come here via Suejan's blpog.
Your birthday post is very good and very moving and the photo of you both is gorgeous.
Plan to come by often and read your posts.
Love,
Herrad
ps the cakes look really good shame you can't pass one to me.

Leigh said...

There are so many attributes you deny having. I am glad to see courage is not on your list.
x

Raven said...

I haven't visited in a while and really should. You write so beautifully and you have such a pure and loving voice. I know you are a teacher for many through your honesty and your perseverance. Glad you got that birthday kiss. You deserve it.

Ana said...

Just to complete 100 comments.
:)
Happy Birthday!!!
I just saw your blog at Herrad's list.
Love,
Ana

You are a winner!

Have Myelin? said...

Well it is too late to say Happy Birthday=)

I like the photo.

coolkid said...

lovely post

my son is also non verbal and low functioning and yes i also hate that term, but agian my only hope is for him to be happy healthy and live each day in the happiness he creates it to be


happy belated birthday c xx