The Special Mother, by Erma Bombeck
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 handicapped children. Did you ever wonder how mothers of handicapped children 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...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea 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 her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel 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 is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"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 if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
"She will never take for granted the spoken word."
Ahhh...the spoken word.
The spoken word is probably one of the most difficult part of this Autism roller coaster we're on. What I would give to have a conversation with her. About something. anything. something stupid like which shoes are her favorite or why she likes pizza so much lately. anything.
Parenting a non-verbal child is a painful frustration that can't quite be put into words.
Thank God for sign language. Ben and I have both become pretty proficient, and Elsie catches on incredibly fast. Sign language and speech therapy have made our lives a little simpler, and, almost a year later, between what few words she has + sign language she can usually relay the message of what she wants/needs. There are significantly fewer tantrums because now she can tell us she wants the kitty bot bot instead of the bee bot bot, or wants juice instead of milk, etc....all things that created unbearable over the top meltdowns. Not that they don't happen, just far less often these days.
But she says words, how is she non-verbal?
...sigh.....a common question. Non-verbal doesn't mean can't speak or say words. It means there is a significant delay in ability, which effects the ability to communicate effectively. <insert sign language>
"Momma, Daddy, kitty, bot bot, bites.." = YES
Every day three-year-old conversations about shoes and pizza=NO
She's developed her own language, which Ben and I usually understand perfectly. You wouldn't.
"ah-bye a ney ney ney." = Puppy, sit down right here.
We speak Elsie.
The good news is that in some cases there is improvement over time, with a lot of hard work. Lucky for us, she got her Daddy's work ethic. :) She is the hardest working toddler I know.
"She will never consider a step ordinary."
Here's the thing about parenting a child with special needs. Everything is a big deal. EVERYTHING. Every new milestone, every new word, every new crisis-averted, every new learned task is a big flipping deal. Everything is a huge accomplishment because it didn't come as easily as it did for others the same age. It required lots of practice, trial and error, patience, and hard work. And usually a little bit of Momma crying. It's HUGE.
Your kid sat quietly in the buggy for a 20 minute trip through Wal-Mart? So what. BFD.
My kid did it? We took pictures, almost cried, bought her a Barbie and two yellow fishies. This took practice. Not kidding, we practice grocery shopping. Small quick trips to build her tolerance. Some are successful, some end in lots of sweat and everyone crying. It's a HUGE DEAL. She did it!
My point in all the above: everything she does is a miracle in itself. She's a miracle. As a point of reference, I tried forever to find a video we took this time last year. We took it so we could show her therapists during the diagnosis process. I can't find it. So, imagine: Elsie lying in our bed, pointing at the tv and crying in frustration. She wants to watch a particular movie but can't tell us. She's only got a few words in her toolbox, Pocahontas and Mulan aren't among them. All she can do is point, grunt and cry and cry until we figure it out, distract her, or she gives up. (that can take a reeeeeally long time)
8 months of intense therapy later, she's moved mountains as far as her speech ability. She's made so much progress it's unreal.
Before I get to the big big news, here's some recent videos that show how far she's come. Remember, our reference point, last year: pointing, grunting, and anger. HOLY WOW! She's so amazing these videos are the best!
<<get ready for video overload, if you don't want to watch them all...skip to the end :)>>
So much progress!!!
Isn't she such a perfect little angel? And how sweet is her voice? I can't believe how far she's come in such a short time. I know for sure, all her therapists and teachers are angels in disguise.
"She is to be envied."
I am to be envied. I get to laugh with her on silly days. I get to cry along side her on hard days, and share in her joys and victories on the good days. But most importantly, I get to witness the small miracle that is my baby girl EVERY day.
I am to be envied, indeed.
-LJ
The spoken word is probably one of the most difficult part of this Autism roller coaster we're on. What I would give to have a conversation with her. About something. anything. something stupid like which shoes are her favorite or why she likes pizza so much lately. anything.
Parenting a non-verbal child is a painful frustration that can't quite be put into words.
Thank God for sign language. Ben and I have both become pretty proficient, and Elsie catches on incredibly fast. Sign language and speech therapy have made our lives a little simpler, and, almost a year later, between what few words she has + sign language she can usually relay the message of what she wants/needs. There are significantly fewer tantrums because now she can tell us she wants the kitty bot bot instead of the bee bot bot, or wants juice instead of milk, etc....all things that created unbearable over the top meltdowns. Not that they don't happen, just far less often these days.
But she says words, how is she non-verbal?
...sigh.....a common question. Non-verbal doesn't mean can't speak or say words. It means there is a significant delay in ability, which effects the ability to communicate effectively. <insert sign language>
"Momma, Daddy, kitty, bot bot, bites.." = YES
Every day three-year-old conversations about shoes and pizza=NO
She's developed her own language, which Ben and I usually understand perfectly. You wouldn't.
"ah-bye a ney ney ney." = Puppy, sit down right here.
We speak Elsie.
The good news is that in some cases there is improvement over time, with a lot of hard work. Lucky for us, she got her Daddy's work ethic. :) She is the hardest working toddler I know.
"She will never consider a step ordinary."
Here's the thing about parenting a child with special needs. Everything is a big deal. EVERYTHING. Every new milestone, every new word, every new crisis-averted, every new learned task is a big flipping deal. Everything is a huge accomplishment because it didn't come as easily as it did for others the same age. It required lots of practice, trial and error, patience, and hard work. And usually a little bit of Momma crying. It's HUGE.
Your kid sat quietly in the buggy for a 20 minute trip through Wal-Mart? So what. BFD.
My kid did it? We took pictures, almost cried, bought her a Barbie and two yellow fishies. This took practice. Not kidding, we practice grocery shopping. Small quick trips to build her tolerance. Some are successful, some end in lots of sweat and everyone crying. It's a HUGE DEAL. She did it!
 |
| Evidence: Even with a smile and NO tears! |
8 months of intense therapy later, she's moved mountains as far as her speech ability. She's made so much progress it's unreal.
Before I get to the big big news, here's some recent videos that show how far she's come. Remember, our reference point, last year: pointing, grunting, and anger. HOLY WOW! She's so amazing these videos are the best!
<<get ready for video overload, if you don't want to watch them all...skip to the end :)>>
So much progress!!!
learning baby signing time in Nov:
singing twinkle twinkle little star - Jan
making a video for Daddy while he's out of town working - Feb
happy birthday solo
So now that you have an idea of how much progress she's made this year......drumroll please....she SAID HER NAME!!! The sweetest little voice said the one word we've been waiting oh so very long to hear...Shesshie :) She's over the moon proud of herself and so are we. She's resorted to speaking in the third person all.the.time. So precious! Shesshie potty...Shesshie bite bites. I've waited for so long, and shed many tears, and said lots of prayers waiting for this day. HUGE victory for our little. When your kid says their name, it's probably not that big of a deal. Us? We cried, called almost everyone we knew so she'd say it for them, and took a million videos.
We went into therapy last week just like normal, except there was a new secretary that didn't know us. She asked Elsie her name, like a million other people before, and I prepared to answer for hear...just like always. But Elsie looked at her, pointed to herself and loud and proud "Shesshie!"
Y'all..I almost fell over and died. I can't believe it. I was able to take this little gem the same day at school:
And she was very excited to tell Daddy when he got home...Gogurt and all
And she loves saying hello and goodnight to the sun and moon :)
Isn't she such a perfect little angel? And how sweet is her voice? I can't believe how far she's come in such a short time. I know for sure, all her therapists and teachers are angels in disguise.
"She is to be envied."
I am to be envied. I get to laugh with her on silly days. I get to cry along side her on hard days, and share in her joys and victories on the good days. But most importantly, I get to witness the small miracle that is my baby girl EVERY day.
I am to be envied, indeed.
-LJ
