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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

Tuesday, December 3, 2013

Little things add up to big things.-March-2013

Yesterday this  grandmother and mother was a happy woman. We took care of Mathias, sweet little guy is teething with a vengeance, so not the happy little dude he usually is. We are always on our toes when he is here because sweet Manda Moo has scratched him before. Yesterday for 95% of his time here (about 8.5 hours) she just let him play and even tried to interact with him once or twice in a positive way. She did reach for him once with that special gleam that does not mean warm fuzzies...I was proud of Amanda, she actively worked on not hovering over or scaring the baby, it is a huge step for her.  She will be 8 years old very soon,  she is still the tiniest little gal, very thin bones and long thin muscles, but healthy, thank goodness.

Kara, oh boy,  has decided she needs to push Mathias down repeatedly, when he is here, he gets the sibling treatment; as every single one of my toddlers pushed their younger sib down once they learned to walk. I wonder what makes them feel they need to do it? Maybe that newly walking baby is just getting too much attention? Mathias is a little toughie and for the most part ignores his silly aunties Kara and Amanda. He completely adores auntie Meghan though.

It is so cute to watch little buddy back up and sit on her lap. She always seems so shocked that anyone is sitting on her, the look on her face is hilarious. She adores him too, as long as he leaves her Barbie's ALONE. 12 year old girls, oh save me.

We got to see our wonderful DIL Anna and two of our sons yesterday too. It was a full day, but a wonderful one.




Please, no more pink ribbons, breast cancer is a deadly killer-October 2013 post

When I was diagnosed with breast cancer in 2003, many very sweet and well meaning people gave me items with pink ribbons on them. That did show they were thinking of me, and I was grateful, it was a pretty hard time, no truly, it completely changed who I am as a person...  I had fitness shoes sold during October that were pink with little ribbons on them, and socks, and so many pins and key chains.

 I went to Susan Komen walks and wore that pink survivor tee and marched with all the other women who had survived, and we all cried when they talked about our sisters who did not.

I lost a body part...an amputation, people hate it when I say that, ugh please, they did a MASTECTOMY, that is not the same thing as losing an arm...I beg to differ, men leave their wives after mastectomies all the time, why, because they think they are disfigured. That amputation is so much more than losing a breast, you lose your identity as a woman, since you have had those breasts since you got nipple buds at age 8-9. By the time most of us are in high school, our breasts are simply part of what makes us young women.

They allow us to feel pleasure during sex, oh, I know, not the S word, but hey, they do.

Some of us use them to feed our babies, I did, I fed precious newborns 5 times. We had a nursing relationship for 2 years plus or minus a few months, that is 10+ years of breastfeeding. I was breastfeeding when I was diagnosed with cancer.

Somewhere around the time I lost a very dear friend to breast cancer that all those pink do-dads seemed insulting. She was an early stage gal, 90% plus survival rate, and then she found some swelling over her collarbone and BAM she is now stage 4. She did not live long after her secondary diagnosis, but she tried so hard, she researched and she changed her diet and she did everything humanly possible (which means lots of chemotherapy...) She died anyway, not because she was not positive, not because she did not try. Aggressive cancer is hard to stop, and it killed her.

Every single time I see Pinktober items my skin crawls, my Mother Laquita and my sisters in breast cancer; Sharon, Deanie, Jamie, Deb, Janice, Madeline, Perlie,  Kim, Kathy L, Kathy S; these were all women I knew and loved, I shared a breast cancer journey with these women, and none of them are alive today. They were mothers, wives, single gals, animal lovers, professional writers, advocates, and all were amazingly strong women. Their lives mean so much more than a pink wash of products in October, so very much more.

Friday, November 29, 2013

Autism and holidays



Holiday gatherings are so difficult for a child with autism, add to that some lingering institutional issues and cognitive delay of Down syndrome and a mom and dad have to be on their toes, most of the time.

Yesterday our tiny Estonian had a no good very bad day...we had Thanksgiving dinner at our oldest sons house and to us his home was welcoming and inviting, to Amanda, it was a new place with smells she did not know, with rooms she had not seen in a year and she was quickly overwhelmed, though outwardly she just looked excited.

She has items she frequently throws on the floor here; the TV remote, the phone, cell phones, toys, etc. Actually anything sitting on a table. We watch for it, and we try to put breakable things out of her reach, she breaks things frequently, some impulse she has to break glass especially, and she will keep going back to it if is is not put away until she does knock it down or break it. Many favorite mugs have suffered at her hand... (attention seeking behaviors) Since she had a developmental leap this past year (think terrible two's), she has been so much worse about this.

Needless to say, we were very nervous about yesterday,  we decided to take turns keeping Amanda with us to prevent hair pulling, scratching, breaking things, or any negative interaction with the rest of her family. It happens often, both the grandsons were going to be there, she targets those smaller than her, sometimes you just feel like crying...honestly.

We walked through the door unloading things,  we do a pot-luck dinner, and Amanda immediately threw all our sons remotes on the floor, so daddy took her to sit on the floor with him. While he was speaking to me, his head turned away, she turned around, found a small table with a potted plant sitting on it, and she toppled it, the plant fell off and the ceramic pot shattered.

We were there less than 10 minutes.

Daddy pulled her into his lap, she was pretty agitated, wiggling, pushing off with her feet, trying to scratch his hands, she wanted down, but she also wanted to make things go crash, bang, boom,  her eyes were rapidly taking in all of the objects she could throw off of tables and shelves. She was scheming, and it was obvious.

I took Amanda in my lap so her dad could carve the turkey, and then he took her so I could eat,  he gave her the iPad so she could calm down with her favorite app, um, that did not work. iPad on the floor. She was just beside herself.I believe that she hones in on the nervousness of others, and since she often hurts the grandsons by scratching them, their moms do not trust her, she feels it, and I do not blame them for wanting to protect their sons, I love those little boys too, and I do not want them hurt by their aunt. (If you are a special needs parent, you probably know what I am talking about, it is the reason many of you stopped attending family functions.)

Daddy went to eat, and I took Amanda to sit with me while I tried to visit with her brothers and sisters and play with my grandsons. She undid one side of her diaper diaper with me sitting beside her, and urinated on her brothers couch. Bless our son for not getting upset, he got some pet stain remover spray and vinegar and I sprayed down his couch.

After I put a towel down on the sprayed and cleaned wet spot, Amanda climbed onto my lap and hugged my neck. She backed away and her pretty blue eyes looked so sad as she made direct eye contact with me, she gently reached out and touched my face. She hugged me again, then looked into my eyes again, she was so sad, and her non-verbal language said "Mommy, I am so sorry".  Those times when she lets you see HER and you see the confusion in her eyes and feel the sorrow, and you know she just needs you to hold her and show her you love her, that you understand her, they can break your heart because you know she does not want to destroy things, she doesn't, she wants to be loved and protected and she wants to be happy, like all of us do.

When she gets sensory overload, there seems there is little to do to calm her down, she needs time alone to calm herself, but in a familiar place, and sometimes that does not help either.. Sometimes a foot rub will, or brushing, sometimes a light massage.

Now when your little girl, who you love beyond measure, has just scratched and bloodied her sisters face, or smashed the mug with the sunflowers you got your husband after he said yes to adopting in Ukraine...lovingly massaging her little feet is HARD to do. You are human and you are angry and upset too.

Patience, patience, patience, patience, you need a lot of patience and lots of LOVE and many prayers, but you rarely reach out for support from other parents, even special needs parents, because sometimes they go to judging, and you are already feeling bad enough and you are already feeling inadequate, who wants to add shame to it? "If that were my child I would..." "Have you tired this?"  Thanks, but that does not help, sometimes just hearing; "So sorry you had a day like that" is all you need, a little understanding and some compassion.

I have been a mother for over 35 years, but I have never mothered a child like Amanda, and I am learning as I go along, like any other parent. I do not have all the answers, she is a very complex child. I am constantly reading about post-institutional behaviors, and RAD and autism, some of the material helps, most does not. Likely those parents read the same books, some of the ideas work for their kids, and some don't, same thing here...

Much of the visit yesterday involved us redirecting Amanda away from various off-limits areas. (bathrooms, bedrooms) and preventing her from hair pulling and scratching.

We got home and put the girls to bed, and both my husband and I were completely and utterly exhausted.  For once I actually fell right to sleep when I went to bed.

Today is a new day, it has to be better than yesterday, which all in all and (despite Amanda's incidents) was a good day, we loved seeing our older kids and their wives and our precious grandsons.

The best part about today? The girls can stay home and can decompress today, though Kara and Meghan do better visiting family, neither is 100% comfortable; the worst thing Kara did yesterday was to take some food off of other peoples plates, that girl LOVES her food...Meghan, who is almost a teenager, stayed in a room and watched her favorite movies.

I am taking our oldest son to Lowe's to buy him a new pot for the plant...a plant that was actually an Easter gift from us many years ago,  and this mommy gets to go and to a fabulous place here in town and paint a painting with our oldest,  my birthday gift from him.  I truly need that time away, I am really looking forward to it!




Tuesday, November 5, 2013

Kara's 9th birthday

I posted on Kara's blog on her birthday, 
she turned 9 on October 28.   


Kara in winter 2008, such a tiny little gal!



 Pictures of Kara on or around her birthday for 
every year she has been part of our family.


Kara  today.

Kara is a clever little girl, she has amazing problem solving skills and sometimes they get her into trouble. She has such a tender heart and is very sensitive to emotions. She is also very rough and tumble when playing with her sisters.  

She has an amazing giggle and her smile makes everyone around her happy! She is not one to smile for pictures though. It is very hard to get a picture of her smiling, it makes me sad that more people cannot see her smiling face!

She loves playing on the iPad and has figured out how to 
use Netflix like a pro. She prefers watching Barney to 
any other video. We tried to find her a Barney plush
 for her birthday; but they no longer make the big fluffy 
ones. I am watching a few used ones on eBay, I know
 it would make her happy to have one of her own!

Kara does not speak; she has apraxia and we are working hard on teaching her to duplicate sound. She uses sign to indicate her wants and needs, but gets frustrated when we cannot understand her. I know she has a lot to say! She fully understands everything said to her and follows directions well (when she wants to...)

We are so grateful that she has been very healthy, 
she has had some minor colds here and there, but 
thankfully nothing more serious. 

We are so happy she is a part of our family. 

Friday, September 6, 2013

Love, loss, and family; when you do not know how to say goodbye

My sister Genene died this week.

I am the ours of a blended family; both my parents were married and divorced, each had two sons and two daughters, then they got married and they had me. My father was 19 years older than my mother. My mothers newest step-daughter Joyce was three years younger than her.

Genene was 19 years older than me, her three daughters are closer in age to me than she was.

I read her obituary today; I learned she had grandchildren and great-grandchildren, I did not even know her daughters got married or had children because my sister and I had not talked since our father died in 1988.  No invitations to weddings, no birth announcements, we did not exist in each others lives. Before our dad passed away I do not think we ever had a real conversation either. We did not know each other at all.

I could say so much about why we did not know each other, I have in another post which will live forever in drafts.

I have no idea who my sister was, what she liked to read, to watch on TV, her favorite color, nor did she know this about me.

The only way anyone will ever know I was her sister will be our fathers headstone, which has all of us listed as his children.

I think I can explain the terrible empty feeling I am having now; my sister died a stranger to me. That is about the saddest statement I have ever made.

Tuesday, March 26, 2013

Happy 8th Birthday to Amanda!!


Miss Amanda had a not so great day. Her nose was runny, she was rubbing her face with snot and rubbing her eyes, the allergy index was pretty high!  Her mood was grumpy and well, today autism won.   Today she was pulling hair, shoving people over, scratching, crying, and raging. I just want to cry for her and with her.We plan on taking the little girls to The Croods later this week, maybe she will be happier and enjoy that.  I wish she could have had a joyous day today. (sniff)

 I was looking forward to her birthday, she has been making great strides in controlling her impulses, and we thought she would look forward to opening gifts and having a special cake. She did enjoy her cake! She did not care about gifts at all.

Happy Birthday to sweet Amanda! I hope our beloved  girl feels much better tomorrow.

Saturday, March 16, 2013

Out and about

We took Meghan, Amanda and Kara to Home Depot today, I know, we must be out of our minds, doing that on a Saturday. Meghan decided to walk alongside her dad, Kara sat in Dad's basket, I put Amanda in a second basket. We needed plants for spring and some fencing for the dogs. 

We started in the plant section, I can spend hours  there, I just love imagining new gardens, and after digging up 7 dead Tea Roses, I have a blank slate.  I was gathering everything I needed for my garden and my empty pots as fast as I could, the place was crowded, not really the best place for our girls, especially Amanda.

I got the flowers I wanted, Kara pulled all the flowers and large leaves off of one of them, she tried throwing a few on the ground. Amanda kicked off her shoe. OK, nothing really terrible there. Amanda was smiling, giggling, and relatively quiet for her. I was feeling relaxed and just happy to not be in pain today, stupid arthritis can really get me down sometimes.

I stopped to look at some red verbena, and a pretty older woman made the mistake of standing near Amanda who proceeded to grab the ladies tee and jerk it and the woman wearing it towards her. Tom removed Amanda's hand, and I apologized to the woman. She seemed totally OK with the interaction, even turning to smile at Amanda. I immediately thought; "She must have someone with special needs in her family". I moved us away from her anyway, for her protection. Once Amanda decides someone needs her attention, she rarely gives up...

We had to go from the garden section to the lumber, which just had to be all the way on the other side of the store. We worry about it, because Kara likes grabbing things off shelves as we walk by, thankfully they are usually unbreakable. Today the aisles were wide enough not to offer her any temptation. We got the usual stares from other shoppers, but most people were intent on their own shopping, and I was glad for that.

We found the temporary fencing for the back yard; we need to spread Diatomaceous earth to combat ticks, the dogs cannot be near the ground, as inhaling the powder could damage their lungs. Amanda and I decided Tom could figure out what kind of fencing to purchase and went back to the garden section. She was in a playful mood so I was goofing around with her, she was making eye contact, smiling, happy, and I wanted to enjoy it.  In her zeal she began to scream, LOUDLY, and of course everyone around us stopped and stared. I just smiled at them and we kept walking.  She did continually try to grab my shirt, but I simply remind her that she needed to use "nice hands" and she would move her hands back. She is getting so much better at listening and pulling back. 

We know the Kara and Amanda can be rowdy, loud, grabby, and are prone to making weird noises, we re-direct them all day for it, but even though we had a couple of 
incidents, I was proud of them today. 

You can tell Meghan is growing up, she calmly walked beside us, only stopping to sit at the patio furniture again, she does this at any store that sells it, telling us; "Look Mom, oh so pretty".  Honestly, a girl who adores lawn furniture? Our Meghan is quirky! Nothing would make her happier than a set added to the back yard. Unfortunately, Lola and Chloe, our "chew it to pieces" Labs would destroy anything but metal furniture, and a place that has 100+ degree summer days cannot have metal furniture, OUCH! Do Lab's ever stop chewing up everything? 

Sunday, March 3, 2013

I found the most beautifully done dolls today, they are made to resemble children with Down syndrome, and unlike some very unflattering depictions of previous doll makers, these dolls are simply  gorgeous!

www.dollsfordowns.org

I hope I can get one for each of my girls eventually, though I would love it if she chose different eye colors for some, our Meghan has very blue eyes, but brown hair (just like her big sister), that combination is always so hard to find.

Tuesday, February 26, 2013

Happily ever after?

Another adopted child died this week, a child from Russia. Anyone following international adoption knows that Russia stopped allowing Americans to adopt a few weeks ago.

Because this very tragic death,  Russians are posting articles about murderous American families stealing their children and hurting them, killing them. I am so upset about this hypocrisy. Imagine, these wounded orphans come to families with RAD and FAS and other developmental and cognitive delays, they are wounded children. Severely neglected, never held or loved, only having their basic needs being met, enough to keep them alive, but not really living. So many orphans die monthly in Russian institutions.                                                                                                                                                    

I have so many friends who have adopted very hurt children, the self abuse these children visit upon themselves is severe and heartbreaking. Scratching  or biting their skin off, pulling their hair out, banging their heads against anything they can, punching themselves in the head or face. rocking, moaning, keening, grinding their teeth.  My two have been home for 5 years ( give or take a few months) and they both have maintained some institutional behaviors.

Kara rocks, she punches herself in the head, she slams her head into the chair if she dislikes what we are serving. She does this off on on all day long, thank goodness she punches herself less, but the bashing her head into things is worse. At night I can hear her bed springs as she rocks.  Kara was from a decent orphanage, they had good heating, OK food, but lazy caregivers who preferred TV viewing to caring for the children. She obviously spent much of her time alone, hence the behaviors she learned to self sooth, she is also non-verbal. I know some of her behaviors stem from being unable to communicate aside from basic signs (food, drink, mom, dad, thanks, please).

Despite that, Kara is a easygoing  little girl, she giggles freely and adores Meghan, those two are best buds and sisters. She happily watches Barney and Disney movies and dances and plays, makes huge messes when she dumps all the clothes out of drawers and out of closets, you know, a regular kid.

Scratches courtesy of Amanda

Amanda has autism  and Down syndrome. Her life is just harder, she struggles mightily to follow the rules we have here. We do not allow our children to hit each other. Amanda though, she loves to scratch. She usually goes after Kara and Mathias, but any person sitting in her vicinity can fall victim to her attention.

Amanda does not mean to hurt anyone, honestly, it seems obvious she is trying to play with them, she just has no idea how, she was never socialized as a baby and toddler, she was isolated and neglected. She is now much like a 15-18 month old in her emotional development, and as such, is acting much like a child that age. When we brought her home at age 3, she was diagnosed with severe delay and failure to thrive, her median development was 4 months.  She has come a long way. It is hard for people to understand that even though she will be 8, she is very behind in every way a child can be. However, she is trying, and she is learning, and we are proud of her efforts and  of her learning some self control.

The effect she has had on our family dynamic cannot be trivialized. My older children have not bonded well with her, they avoid interacting with her because they do not trust her to behave herself . All have had their hair pulled or have been scratched by her.  I know it sounds like that is not a big deal, but she draws blood. She and our youngest son have bonded, he has spent the most time with her.

The sad fact is, Amanda craves attention, loves to be hugged and loves to spend time with people. She is an adorable little monkey and can be the sweetest child.  Her impulsiveness gets her into a lot of trouble.  She is also very jealous of any attention her sisters get, or her nephews, she wants all the attention all the time.

As long as it is myself, my husband and the little girls here, life is pretty calm, but change that dynamic  by bringing in our grandson or other children, and Amanda goes off-kilter. Kara will also get very giddy and jump all over everyone. They love company,  but they get wild. This makes for a chaotic time and we find that our older kids cannot wait to leave here. They think we live with that chaos all the time, not knowing it is their presence that brings it on.  If they were here more, it would stop happening, but they work, they have their own families, and their own lives, so that is not possible.

Some days I cannot wait for the girls to go to bed, when there has been lots of head banging and scratching and crying I am just exhausted. I sit here and shed some tears myself.  Many friends and family just do not want to talk about this aspect of our lives. Old friends and extended family feel we asked for this; we had the audacity to adopt children, thinking we were such great parents we could take this on, so if we are that perfect, we can do it on our own.  A few have said this to our faces, others have said it to each other. Some say we are special or saintly for adopting.  We are simply extremely ordinary human beings who saw someone else in pain and wanted to help. We followed the law of the universe; to care for "the least of these". We are no different than any other parent, sometimes we have the answers, and sometimes we do not.  We did not cease to need support and love just because we added to our family via adoption, but that is exactly what happened.

Why share this? It is simple, I understand what can happen to a family when they adopt internationally, people admire you and are suspicious of you at the same time.  We learned our neighbor believed we only adopted to get tax payer money from the state. (In AZ international adoptions do not qualify for state subsidy ) Can you imagine a person adopting just for $$, I guess some people do, but we are not those people, we paid considerable sums to bring our girls home.  Others want that happily ever after where our love opens our child's heart and changes them into  loving, kind, caring and "normal" children (with Down syndrome). You have better not tell the truth about how hard it can be and you had better not admit you feel overwhelmed sometimes. You better never say; "Why did I do this?" because someone who is adopting might be scared and abandon their plans, and then how will all those people get paid all that money for that child's adoption?  I admit I hate how much money passes hands during adoption, it is indecent.

Even though  raising our daughters (all our kids really) can cause stress sometimes, they do not put us through what children with severe RAD put their parents through. I read that the Russian child (Max) was covered in bruises  and I read comments from people accusing  the parents of doing this to him, saying there is no way a child could do this themselves. Truly those people do not know what they are talking about. Self-abusive children can inflict tremendous damage to themselves.  I do not know if those parents hurt Max, his death is a terrible loss, a tragedy and I am saddened to hear about it. However I am angry that people refuse to educate themselves about internally adopted children.  No matter how many classes you take or books you read, nothing prepares you for parenting a hurt child. You learn as you go along  the best way to help them. Just as you learned when you brought that tiny baby home and had no idea how to parent them.

Sometimes parents get lost, and sometimes the unthinkable happens and children die; like the 20 Russian children lost due to accidents, neglect or outright abuse. There is no excuse for it, and no child deserved to die at the hands of the very people who swore to love and care for them, but who is making sure those parents have support? Who makes sure the children are safe in those homes?

Our social worker has never visited us since she completed our home study. We have no post placement requirements from either country. Kara has a report due to Ukraine this year, Amanda's country did not ask for any since the first 6 months she was home. Every person involved in the adoption of our beloved daughters has fallen away into the past. No one from either agency has asked how the girls are doing for over 3 years.  Think about that, not a word, no call, no email, nothing from Reece's Rainbow where we found Amanda either.  I do not think it is lack of care, I don't, we just fell out of touch. Sometimes it bothers me, I feel like there should be someone somewhere who cares about what happened to the girls, do they wonder how they are?  

If it were not for Facebook groups where I can talk with other parents about  our adopted children, I would feel pretty alone. I am grateful for the people who thought to form the groups, it does not replace loving family and friends who we can spend time with, no, but at least there are others who know what we are going through in our day to day lives.

All of us; hundreds of families,  love and care for our adopted children like they are born to us. We cry because our children are in pain, we pray for their relief from their inner turmoil,  they are  members of our family. I do not know what image those Russian citizens have in their minds about what happens to the children here, but the majority of the children adopted  by families I personally know are lovingly cared for.




Beautiful artwork featuring children

Such a beautiful Video

I have a voice

Gifts video

WDSD