For Chosen Mothers

Blogger doesn't always tell me when people comment on my blog - and it's a shame because I just discovered a really great post here, after someone read this post I made.

Below is a poem that she has on her website:- (be warned - it's a tear jerker)

For Chosen Mothers

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of a child with special needs. Did you ever wonder how mothers like this are chosen?

Somehow I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As he observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew. Forrest, Marjorie, daughter. Patron saint, Cecelia. Rudledge, Carrie, twins. Patron saint... give her Jude. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a child with special needs."

The angel curious. "Why this one, God? She's so happy." "Exactly", smiles God. "Could I give a child with special needs a mother who does not know laughter? That would be cruel."

"But has she patience?" asked the angel. "I don't want her to have too much patience or she will drown in a seal of self-pity and despair. Once the shock and resentment wears off, she'll handle it.

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world She has to make him live in her world and that is not going to be easy."

"This one is perfect. She has just enough selfishness." The angels gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she's to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says "Mama' for the first time she will be present at a miracle and know it! When she describes a tree or sunset to her child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.

"And what about her patron saint?" asks the angel, her pen poised in mid-air.

God smiles. "A mirror will suffice."

NEWS|Protein mutations link to autism

Autism impairs social interaction

From BBC World

Scientists have discovered how mutations in two key proteins may lead to autism.

They have shown one protein increases the excitability of nerve cells, while the other inhibits cell activity.

The University of Texas team found that in normal circumstances the proteins balance each other out.

But the study, published in Neuron, suggests that in people with autism the balance between the proteins is knocked out of kilter.

Understanding how the autistic brain is different to the neurotypical brain will have significant implications for education and intervention Professor Simon Baron-Cohen University of Cambridge

The findings back the theory that autism involves an imbalance between excitatory and inhibitory connections between nerve cells.

The proteins, which serve to physically link nerve cells together, were discovered by the team at the university's Southwestern Medical Center more than a decade ago.

However, until the latest study their exact function had been unclear.

Lead researcher Dr Ege Kavalali said: "Mutations in these proteins have recently been linked to certain varieties of autism.

"This work provides clear insight into how the proteins function. We can never design a therapeutic strategy without knowing what these mutations do."

Bridge between cells

The proteins - neuroligin-1 and neuroligin-2 - create a physical bridge at the junction - or synapse - of nerve cells, enabling them to make connections with others.

In studies on rats the researchers showed that raising levels of both proteins in nerve cells led to the creation of extra synapses.

Neuroligin-1 was associated with excitatory connections and neuroligin-2 with inhibitory connections.

When they introduced a mutant form of neuroligin-1 thought to be carried by some people with autism the number of synapses fell dramatically - and the cells became significantly less excitable.

Infants are born with far more synapses than survive to adulthood. Active synapses proliferate during development, but inactive synapses are culled.

The latest research suggests that carrying a mutant form of neuroligin-1 may depress the number of synapses that make it into adulthood.

This could hamper the ability of nerve cells to make the usual connections, and lead to the deficits seen in people with autism.

It affects the way a person communicates and interacts with other people.

Communication problems

People with autism cannot relate to others in a meaningful way. They also have trouble making sense of the world at large.

As a result, their ability to develop friendships is impaired. They also have a limited capacity to understand other people's feelings.

Autism is often also associated with learning disabilities.

Professor Simon Baron-Cohen, director of the Autism Research Centre at the University of Cambridge, said research into the role of neuroligins in autism was important.

He said: "We need to know more about both the genes that code for neuroligins, and the neuroligins themselves, to establish if they play a specific role in the cause of autism spectrum conditions and in which subgroup.

"Understanding how the autistic brain is different to the neurotypical brain will have significant implications for education and intervention."

I am still learning...

and it's good! Aimee and I have been going to a social skills group every Tuesday, this term. There are two weeks to go and I have been amazed at the amount of knowledge I have gained. The children are learning social skills and us Mum's are together learning how to cope.

I have learned so much about "theory of mind" and what to do about some of the issues that we are dealing with. It's funny because I have done similar courses before and not gained anything spectacular from them, but what is different about this course is that this time all the children involved are girls with aspergers. Girls exhibit autism so differently from boys - it is so nice to be able to discuss their unique differences with other Mum's.

The woman that facilitates our group has explained autism as "the brain being scrambled - like eggs - the messages are not going through properly". It made for an easier way of explaining to the other children, why their sister doesn't always handle life well. They seem to be more understanding of her lately - and that's good news, because Aimee has been having a bad time of it. :(

We are constantly having to put off having a babysitter, because of her behaviour - I don't want to lose our current sitter, and she is almost at her limit with Aimee. Still, we will try again tonight, when Jonathan and I go to the movies tonight.

my Holland

I have been a little quiet on here about my personal "Holland" story. I have been in the midst of living it, wondering where and what I can do in my Holland. Especially, since I bought all the guide books for Italy...

I knew what I wanted out of this experience called life. I have been disappointed most times with what life has thrown at me. Not with the people I have been given to care for, just the expectations I had of who I would be...

I feel overwhelmed with the task of being the best mum I can be, whilst retaining who I really am. Who am I anyways?

What does this life require of me anyway? Who should I be? Where is a guide-book when I need one?

welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.

Autism Awareness Month (In the States anyway...)

It is Autism Awareness month in the States, and I have found a really cool slide-show about a boy (Teddy Willis) who is 11 and has Aspergers Syndrome. Aimee would like you all to take a look at it, as she says that he feels the same as she does.

The end quote of the slide-show was very moving to me;
"I just want people to treat me better like one of the other normal kids. If many people knew about Autism, then they might think about what the person's good at and not what the person isn't good at" Teddy

Well-spoken!!

Anyhow take a look here.