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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Wednesday, October 3, 2012

Tuesday, October 2, 2012

Monday, March 5, 2012

The dog ate my ...dishwasher

The thrill of getting new appliances, nothing beats it, right, strolling through a showroom full of gleaming stoves, refrigerators, dishwashers.

It does not take long for a salesman to find you, a millisecond? They work on commission, so they are highly motivated to be helpful. You tell them you need three appliances to replace yours, which you had 12 years, and well, they used to work better and look better. He tries not to look too eager, a practiced professionalism as he shows you THE MOST EXPENSIVE appliances in the entire room. Go for broke, why not.

We go from one to another, hearing why the elite is so much better than the others, better features. Things you really do not need, but they sure are nifty. Then the first time emotion to shows on his face is when you say, "We actually do not need all these features" and he sees his commission decrease...resignedly he shows you the appliances that are a step down from the elite, and you finally make your way to the dishwashers, you know you want stainless steel interior, and that is about it.

You find the color you want, the style (buttons on top to prevent curious fingers from turning it off before it is done) and you go to pay. Happily he tells you "These prices are only good today, tomorrow they all go back to normal" The tail end of The Presidents Day sale. So you take care of the money and arrange delivery, The refrigerator cannot be delivered until the middle of the month, back-ordered. The stove and dishwasher will come the following Monday.

The salesman gives you his card with his cell phone number on it, he tells you to call him if you have any problems.

Husband buys a kit for the refrigerator because you finally are getting an ice dispenser, something that will make a certain 11 year old happier than she should be over something so mundane, and husband installs it. You pull out and clean under everything in preparation for the shiny new appliances. You get a call from the delivery man, they can be there between 3-5. They get here at 4:45.

They haul your old stove away while you sing Hallelujah, dumb stove either did not work or burned everything. Your husband told Sears he wants to install the dishwasher because they charge too much. So they leave it outside, in your back yard.

Your 6 month old Chocolate Lab has been her crate the entire time the deliverymen are here, when they leave, you let her out. She needs to go outside, so you let her out the back door.

She is very interested in the huge cardboard box sitting on your back porch. She wonders what it may taste like? She takes a bite, and you tell her NO, she saunters away, acting disinterested.

You take a load of laundry out to the washer and she has gone back to her huge present and ripped a piece of cardboard off. You tell her no, and she goes to lie down. You spray dog repellent on the box.

An hour later you walk back outside and see white insulation and cardboard all over the patio. You catch very bad dog yanking on the drainage hose. She sees you and crawls to your feet, you tell her "Lola, to your crate now" and she runs in and lies down, staring up at you with her golden-brown eyes, looking very sad.

You look at the drainage hose, there are holes in it, can it be patched?

Husband comes home, you show him what dog has done, he tries hard to control his anger, not certain if he is mad at the dog or his wife?

You call Sears 800# and ask about replacement hose, tell them about the dog, they laugh and say "Oh yes, we had a Lab once" they transfer you to warranty dept, you tell them about the dog, more laughter, the hose is not covered by the warranty, it does not cover dogs. They transfer you to Sears Dept Store who say they have replacement hoses for about $20. You warn them husband is not happy and to expect a graying man with a scowl on his face.

Husband rushes to Sears before they close, wanting dishwasher installed ASAP, and is welcomed by appliance manager who addresses him by name. Husband does not know you told manager to expect him. He is surprised he knows his name.

Email receipt says husband has bought hose and the garbage disposal kit which the deliverymen forgot. They do not charge him for the kit, since it was paid for already.

Husband comes home and tries to put hose on, it kinks, it will not work. Husband gives up. Goes to bed.

The next few days husband attempts to patch hose, all attempts fail.

You go on website to order replacement hose, with shipping it will be $50. You call the salesman who gave you his cell phone number and tell him what happened with dishwasher, and he laughs, you are getting weary of folks thinking this is funny.

You ask him if Sears can order part so you can avoid shipping, he is not sure they can, and hangs up to ask the department manager. 30 minutes later he calls to say yes, they can order it, and no, there is no charge. He laughs and tells you:

"We love dogs, and we have all had something like that happen".

The part will not come until your new refrigerator is delivered.

At least the part is free.

The guilty party.

Wednesday, February 15, 2012

The Dual Diagnosis of Down syndrome and Autism

Let me be completely honest, I hate autism this week, I know hate is a strong word, but what it does to our Amanda is heartbreaking and frustrating, and I am so tired.

Is it only Wednesday?

When Amanda came home it was like she was waking up from a bad dream. She was obviously neglected, a mouthful of cavities with yellowed teeth and gingivitis showed a toothbrush never passed her lips, she was 17 pounds skinny at age 3, she was 29 inches tall, she came home in 12-18 month clothing, 18-24 fell off of her. I know her orphanage did what they were taught, but they obviously did very little beyond feeding her and changing her diaper.

(I fervently wish someone would go to those orphanages and hold those children, show them love and give them one on one attention, because the lack steals so much from them.)

She had fetid breath.

She smelled awful, bad enough that most doctors who cared for her in those early months gagged if she breathed on them, the optometrists assistant nearly vomited when she did, poor woman was so embarrassed.

Amanda is a beautiful little girl, she has an endearing personality when her autism takes a back door to her sweet side, but her autism gave her a very prickly personality, she preferred being alone, likely why she was neglected as severely in her orphanage, she did not demand attention at all. When we got her home, numerous times a day she would scoot on her bottom to her bed, and would wail to be put back into it. She hated to be touched, held, could not make eye contact at all, if you tried to hold her, she would make her hands into claws and scratch you in terrified fury and confusion, she had no idea how to accept comfort.

Amanda also had no idea how to play with a toy, she would push it back and forth on the floor, wiggle it and watch it in her peripheral vision, or throw it.

She had an entire litany of repetitive behaviors that she self-comforted with, teeth grinding, audible through her teeth breathing, head dropping, repeat, rocking, even masturbation, yep.

She has mixed sensory issues, she loved massage, brushing, vibrating toys she could hold, she loved to be held, back to stomach, but face to face was hit and miss. We worked a long time to get her happy in a persons arms. She would sit with them, make eye contact, flirt, smile, everyone was so happy with her progress. Then she begin to backslide...There are days she will fall into a hug with her faced pressed against us and melt with happiness, others she grabs our clothes, hair, faces, and pinches, scratches, or pulls HARD. We never know from one day to the next how she will react. Often she does both, and usually with a manic look on her face.

We had no idea she had issues when we adopted her, but we learned very quickly, we were certain Amanda had autism that first month home, but we waited the requisite year before we had her tested. Everyone seemed to think it was institutional, but as I have learned in my reading, many adopted children with these severe behaviors do indeed have TRUE autism, the lack of love and attention they get in the orphanage only makes the behaviors worse.

Amanda's development was so delayed, she did things a very young baby would do, although she could sit, stand, locomote (in her own very original way) she had zero self-care skills. We fed her all her meals for 3 years. Miraculously and after a lot of very hard work, Amanda finally allowed a spoon to stay in her hand, and she began to feed herself. It was a tremendous milestone for her, but I think she misses that one on one attention too. You can see her sometimes watching me feed my Grandson with a wistful look on her face, and she asks to be held while I am feeding him. Actually it is pretty typical behavior when the youngest loses that status to another child, even if he does not live with you. She will have to deal, it is life, ya know? I have been through this 7 times with my kids, all the other youngest children survived, Amanda will too.

She got better and better about every single autism related issue she had. And then the switch got tripped...her development has progressed from infancy to what most mothers would call "terrible twos". With Meghan, terrible twos lasted 3-4 years, those annoying things two year old's do to their moms as they learn about their world, (to be honest it is really two years with typical kids, we called it terrible-twos and tyrannical threes). Kara finally stopped throwing everything a few months ago, though she still does it occasionally, that throwing can test a parents patience...especially if it is a remote, cell phone, camera. sigh

It is just so hard, a child with Down syndrome going through this stage is a challenge, it is really a lack of judgement that makes it dangerous for all kids. Autism has added something else to this, it is a Tasmanian Devil, or Godzilla persona, pure destruction, throwing everything, pulling hair and terrorizing the dog, cats, Kara, sometimes Meghan. Smash O crash. Grrr argh monster, stomp stomp BOOM! Yesterday Amanda was taken to her room, on the way she knocked over every single thing she came into contact with and she was screaming the whole way there. My son and his wife came for a visit, and they had Mathias with them, she was all over them like a Piranha in South American waters. She got to be in time out three times. It was really for every ones protection, including hers. I wanted to cry.

If you come over for a visit, watch out. Amanda will get behind you and try to kick you off the couch. If she sits with you, you may be pinched or scratched. She will pull your hair in the middle of a hug. She knows better, and all those years of "gentle touch" "kind hands" well, gone, she either cannot remember, or just cannot help herself.

Their special ed teacher J called me two weeks ago and I told her HELP, Amanda is acting up so much, we talked and she said "It is fantastic though, her development is progressing" and she giggled, good thing she was on the phone, cuz her hair may have been pulled, and not by Amanda. I sighed and laughed with her, she was right, it is a great thing, Amanda's emotional development was stuck in infancy for so many years, moving to toddler hood is a milestone. *sob*

She is very jealous of her new nephew...who her mommy loves so much, and HER mommy holds and feeds him, and he gets the attention she wants to have ALL THE TIME these days. I cuddle her, all too often while keeping her hands away from my hair and gently telling her "nice touch, soft touch, NOT A m-e-a-n touch" (Yes I admit to using silly voices when I do this, it gets her attention)

Except I am exhausted from stopping her, I look at her and ask her, "Little girl, you know you are hurting people, and it makes them not want to be near you, right?" She looks at me and asks for a short hug, she knows, she does. So we begin all over again to teach her how to channel those icky, wiggly, cannot-stand-to-be-in-my-own-skin-feelings.

Autism, I hate it, I feel like it robs Amanda of the joy she would otherwise have, it seems to take control of her and makes her do things she knows not to do, and the struggle is there on her little face, the confusion, so she screams and yells and throws things in frustration. She has to work through this stage, no magic pill with make it go away; just love, lots of work, PATIENCE, and TIME.

Can I tell you how much I want to cry at the end of each long day? I am exhausted, but I am a mom and this is what we do, we work with our kids NOW so they can have a better future.

Tuesday, January 24, 2012

Sharing pictures

I wanted to come out of blog silence to share some pictures. Another post will follow this one about how I am doing. These were too cute not to share.

Kara with her constant companion a Groovy Girls dolly, all chewed up and ripped up and sans clothing, this doll is her favorite. Scratch on he face, courtesy of Amanda, who has taken to using her nails on all of us lately, ever since Mathias was born, sigh. Kara is holding a bowl to tell me, chips please.
Oh Amanda, it is so hard to get a picture of her looking right at me. Her nose really is not that big LOL, perspective...Look how much she is changing, and is there any doubt of her birthplace, I mean truly, she is 100% Estonian! Lately Amanda has been acting up, pushing people off couches, scratching, pulling hair, and saying uh uh uh (NO) like you would expect from a two year old, wow, she is almost 7!

Meghan is 11, a young lady already, she wanted to model one of the dresses Julia gave her for Christmas. When I say Meghan is 11, I mean she is like all other 11 year old girls; sassy, emotional, rebellious, oh save me, here we go again...

My grandson Mathias, he is such a good baby, and he changes so much every single day! I am lucky enough to babysit him a couple of times a week, and I am loving it.

Mom look at me, MOM LOOK at ME,MOM. Yup, the other dress from Julia, Meghan loves them.

My doggie baby Lola, such a rascal, and I love her to pieces.

Wait, that is Amanda's foot, stop that Lola!

Kara seems to sleep all the time, luckily we can stop afternoon naps for the most part otherwise she is up half the night bouncing in her bed. You can see that she can sleep anywhere, she is waiting for lunch here. LOL

Meghan loves to pose for mom, "Picture of me Mom" is a favorite phrase.

We got Lola so we could train her to be a companion animal for Amanda. Her temperament seems contrary to those wishes, but the two of them migrate to each other all the time. Lola is mouthy, she is getting better, but the puppy trainer did not seem to have much hope for her. She is almost 6 months old. And no, she is not allowed on the couch, oh, bad dog, spoiled brat!

Guess what we had for lunch yesterday?

Losing the will to blog-an update of sorts

Grief and loss, I do not do well with either, always holding on to the emotions longer than most people feel I should. On October 14th 2011 Becky, my dearest friend of 23 years passed away suddenly. Pulmonary embolism following neck surgery. I miss her terribly, she was such a huge part of my life, and I find that people cannot understand the deep friendship we had. I still weep when I realize I cannot share my day with her. I was told that I should "Feel better by now" and "Should let her go". Really? A little over 3 months has passed, so that is long enough to forget a friend who was like a sister to me? That makes me even sadder. Perhaps those who cannot understand my grief have never loved and lost a close friend?

Becky loved the beach, living in Arizona made her sad, and she longed to live closer to the water. She used to say that she pictured the two of us walking arm in arm in our elder years, two old gals sharing a stroll, that image was in my head when I fought cancer, I felt certain that meant we would indeed do that, but life had a different story to tell. I do have a wonderful husband, and I cherish our relationship, still, I feel a woman needs female friends to share her heart with, as they can understand what most men simply cannot.

I found the picture above on-line and asked the photographer if I could share it on my blog. It depicts a woman walking alone on the beach, and that is me now, could I stroll with my children and husband, of course, but I will never take that walk with Becky in this life.

I have so many wonderful reasons to be happy, I do, I have a husband who loves me and does his best to be my life mate (I can be difficult to live with sometimes) I have healthy children, my youngest three are rarely ill, (knocking on wood) and with Down syndrome, I know I am blessed, that they are blessed, not to have one of the many ailments that can and do make people with Ds ill. I am very grateful that my girls have minor issues; alopecia (Meghan), dermatitis (Amanda), uncontrollable frizzy hair (Kara). Of course there is Amanda's autism, which makes her emotional life hard, and our lives challenging, but we accept it is who she is. Still if I could make a wish, it would be for her NOT to have it. Amanda's autism is cruel, it traps her potential, it traps her self-expression, and it makes communication nearly impossible. And yet we refuse to give up!

I have a new grandson, Mathias Owen, he is a wonderful baby, and I get the pleasure of being able to babysit him sometimes. I can already see that his brain works differently than the children I care for daily, his development is right on track. The girls adore him, though Amanda is pea green with jealousy over my divided attention when he is here. I get to hold him and feed him his bottle, I find it feels my heart with jubilation and gratitude, gratitude is my constant companion since having cancer, I cherish every single moment I can love another person in this life.

It is another one of those things people think I should forget, nearly 9 years since I got the news I needed a mastectomy, so I am good to go, right? (Stop playing the cancer card Kris) Cancer is vanquished and I am cured, well, yes, and no. I lost over half my very close support group friends to cancer, so no not gone, gone to sleep sure, but gone forever? I pray it is so. I know more about cancer than a lay person should, how it grows, why and how it spreads to distant organs and bones...and I will leave it at that. People hate talking about the C word, the big C, etc. Scary life stuff, please is part of my life story, from my mothers death to my diagnosis to the loss of many dear friends. I will not stop talking about it because people are afraid to utter the word.

When I cuddle Mathias and feel his little head against my cheek I painfully remember that Kara and Amanda never had a doting mother or grandmother to love them as infants. When they cried no one came to pick them up and soothe them. When Mathias cries for a bottle, Kara is right there stroking his cheek while I warm it up. I got a revelation last week that she may have done the same in her orphanage since it is her response every time he makes the slightest noise of displeasure. Kara must have given comfort to squalling infants while the caregivers sat by and let them scream. I wonder how many children actually did try to comfort each other from adjoining cribs? I wonder how long it took them to lose their compassion for one another? The older children did not seem to notice when another was sad. And if an older child (4-5 years old) had the nerve to cry in pain or sadness, the caregivers slapped them and yelled at them until they stopped. Yes, THEY DID. After being there for nearly 6 weeks, they did some terrible things in my presence.

The thought hurts my heart, the revelation of what life is for an infant or child without a family makes me weep. The cries and sobs of those babies in Kara's orphanage in Ukraine still haunt me, the image in my mind of workers sitting and chatting, eating sunflower seeds and watching TV while a baby hiccuped and choked on sobs, no expressions on their faces as a baby cried for help and comfort. My stress growing as I longed to run to the back and snatch that baby up, oh how it hurt me to hear his/her pain, Kara was also visibly upset when that certain baby cried, her lower lip protruding into a pout, her eyes welling with tears. (I got to see him/her later, a little one with CP, bald, with such an engaging smile, the only young infant in Kara's groupa.)

That scene played out nearly every evening I visited Kara. The older workers emerging from the back rooms scolding the younger gals; those same four women sitting and ignoring the children, the smell of them, their body odor, of clothing left unwashed for days, sweat, and stale cigarettes, the sheen of oil on their faces from the heat of the room. All embedded in my memory. One of them could have held that crying baby, but none seemed compelled to care. I was told by our facilitator that they resented how poorly they were paid, and did the minimal, and they felt that they should not give attention to the babies, that the sooner the infants learned they should not expect it, the better...some babies gave up easily, other stronger willed children kept trying.

Can you imagine, crying out in pain and fear and being ignored day after day after day, the only time someone held you was to change your diaper and to feed you? Both done without that person speaking to you, done in a assembly line fashion? Never having you forehead stroked or a gentle kiss placed on your soft cheek?

I know that my two adopted daughters were forever damaged by that same negligence, and no amount of love and care will fill the void of their first 3 years. It makes me wish that the hearts of their birth parents would have been strong enough to disregard societal convention and keep their babies. It has been four years since I was in Vorzel for 42 days, and my grandsons crying transports me right back to the orphanage every time, my mind does not register the passing of time in days, months and years, sure I can mark time off a calendar, but time means nothing to my injured heart and conflicted memories of that time.

When I am sad, my mind plays over the other times I felt sad, angry, scared or confused, I contemplate those experiences and try to reconcile them, try to forgive the people involved a little more, I can hold grudges for a while, it is not something I am proud of. Life is a process, and I am terrible at compartmentalizing, I suppose if I could place every emotion into a neat little box I could just forget the past, but everything blends together like sand on a beach, each experience shapes me into a different person day by day, for better or worse.

I have often heard time heals all wounds, I beg to differ, and perhaps some wounds should not mend completely, lest we forget the reasons we are living. I have always felt that we live to love and protect one another, to lift people up when they fall, and to stand up and try to stop grave injustice. Oh how many times was I called an idealist or a Pollyanna, etc. I find it curious as I am not blind by the woes and evils of the world, and I am not insanely optimistic either. What seems to irk people the most is my need to make them aware of those things, to wake them up and make them CARE about something other than their newest TV or car...

If we forget our experiences whether they are painful or joyous, we are nothing but unconscious souls existing in a life with little meaning. I would rather be fully aware of everything life brought to me, painful or not, and I learn and grow more from adversity, though I do not wish to suffer through it, I feel it helps me have more empathy for others who are struggling too.

So I go on, embrace what I am feeling, I wonder how Becky's loved ones are coping, I wonder if they feel the same intense void in their lives without her, I am sure they do. I think all of us want to leave a legacy behind after we die. Yes Becky had her own woes and challenges, but it never stopped her from showering the people in her life with unconditional love. Unconditional love is a rare and precious gift, and I was lucky to be the recipient of it.

Beautiful artwork featuring children

Such a beautiful Video

I have a voice

Gifts video