I Beg your Pardon?

I am watching my husband get Amanda ready to go bye-bye, she is so excited she is hitting herself on her head; she went from that do saying dida dadi da, to grinding her teeth, to rhythmic breathing, to dropping her head to trying to scratch my husband. She is excited to be going someplace with her daddy. she is tugging at her shirt because it is too short. My husband is calling her over and over again to get her attention to change that shirt, she is tapping her fingers together and ignoring dad. She is a character, we call her a stinker a lot, she is playful and mischievous, and a lot of her characteristics we attribute to her autism.

Earlier I retrieved her from the back yard where she sat head hanging down, all alone, grinding her teeth. We have to engage Amanda constantly or she does get lost in her head. When she is engaged with another person, she is different, and she loves attention. She also does not discriminate between family and strangers and will jump into anyone’s arms. Orphanage life changes children a lot; especially true if that child also has autism.

3 years of constant work have helped Amanda a lot, but she continues to revert back to her self stim whenever she is stressed.

Friday I took Amanda to a university speech and language center for her IEP speech evaluation, since we school at home via on-line charter, she cannot go to public school here to get evaluated for her IEP. They asked all the same questions all therapists do, they did ALL the play skills tests (they ALL do the exact same thing in every single evaluation), and they interacted with my sweet girl, observing at how she ate food, licked a full of additives, artificial everything sucker (no, we do not give our children garbage like that), and opened her mouth to look in with a flashlight to see the upper palate and to make certain she did not have any septum's (because of course no one who has examined her before them checked for that) What, do I have a tone? You betcha, why you ask, because honey, I am MAD as a HORNET.

They did and said quite a few things that astonished me, but this one statement spoke volumes about how they felt about me (maybe all parents): “Did someone tell you Amanda had autism, or is it something you just think is there? Maybe you should leave it off when you write down her diagnosis?” Yes, they most certainly did say right out that I was making up something about my daughter. Does that mean they thought I was lying? You can read about the day we got her diagnosis here They could not see any autism, wow, amazing insight, really…. though they sure did call my sweet little Amanda a Down syndrome girl repeatedly, even used the endearing term "Downie" when describing her to one another. This People First language mom was livid just by that, BUT when I tried to talk; they ignored 80% of anything I had to say. Yes, even turned their backs to me and made certain I could not see my daughter while they hovered menacingly (to Amanda’s perceoption) over her tiny frame. I was thinking “What in the hell is wrong with these women?” And the anger was beginning to build up.

“She has Down syndrome, acts like a child with Down syndrome, but there is no autism there. She is just a normal child with Down syndrome, period” Um, what were this woman’s credentials again? Was she a developmental pediatrician, a developmental specialist, autism specialist? A post institutionalized behaviorist? Honestly as far as I know, she was a speech pathologist. At the end of all of this verbal ill-treatment I did end up raising my voice and telling her very loudly what I felt about her and her professionalism.

I made it clear to all of them that they could not possibly get close to being able to tell me who my daughter is after seeing her 1 ½ hours. It was a mere glimpse of the true person, and how dare they assume they could. At which point much backpedalling ensued. “Of course we can’t know everything from this”, “Of course you know her better”, and my favorite “It is commendable that you and your husband took on these girls”. They had not read the paperwork I filled out about Amanda, all they knew was what they saw.

I feel like I need to say something about this subject before I continue with the rest; I truly dislike being commended for adopting; I am not one of those people who think adoption is a mission to save the world. We did not rush into adoption to be glorified; adoption to us is about providing a home and loving family for a child who had none. It is not about getting praise, we are so incredibly grateful to have had the privilege to bring two wonderful daughters home to share our lives. THEY do not owe us anything because we did. Imagine the feelings an adoptee would have knowing their adoptive parents expected gratitude for their “rescue”?

So moving forward, it was the worse thing she could have said to me. I got home and I did what all good moms do, I called Amanda's pediatricians office to report that apparently my good parenting and all her therapy and such MADE HER AUTISM GO AWAY, like magic, just gone. The nurse was aghast, she likes me, knows me, and she likes our girls, and she was so upset that someone would accuse me of making a diagnosis up. I asked her if we could go back to the developmental pediatrician for a follow-up. WHY? So I can get that new report and send it to the speech clinic, oh and so I can share with the developmental pediatrician Dr T that someone thinks her diagnosis is incorrect....

I can remember sitting in Dr T's office in 2009 while she did the second autism evaluation of Amanda, and after a couple of hours of questions and observation she said that Amanda had many characteristics for autism. I had tears in my eyes, I was upset, I still am, my little daughter has had so many issues to overcome, to fight against, and it was so unfair that she had autism too. “Please no, not that, please God no”; that is what I was saying in my head. It hurt to hear it, we hoped it was institutional*, we hoped some of her behaviors would go away (with love, therapy approaches, and TIME) some have, but they are not GONE, they are diluted.

Imagine you have some white icing and you drop red food coloring in it to make it bright pink, and decide you want it white again. No matter how much white icing you put into that pink icing, it will never be white again. Even though we work and work on Amanda's autistic behaviors and help her to escape the self-stimulation cycles that she can get trapped in, it does not mean they do not come back with a vengeance when we stop. It is a constant effort on our part, always hoping that eventually Amanda can learn to self-correct some of her behaviors that make it hard for her to do other things.

Amanda was happy and engaging at her appointment, she jumped from lap to lap and smiled and played, even sounded like she approximated some words; Ap for Applesauce. They seemed very excited she was trying to talk, but Ap is something Amanda chants to when she rocks when she is upset…and the they said I should assign meanings to these utterances so Amanda can begin to associate her random muttering to true words, umm, OK, something to think about. (One of the only helpful things they said to me)

Outwardly Amanda was the way we wish she could be all the time, except that even though outwardly she seemed happy, she was grinding her teeth and rhythmically breathing showing that inwardly she was not doing well, something these astute professionals completely missed. Those are her signs that the stress of the activity was getting to her. Something I am attuned to because I spend all day every day with her and know her better than any other living person on this planet, including her father. Despite that I was dismissed and treated like someone who did not matter one bit, incidental to Amanda's growth and development.

I walked out with my tiny daughter from hypercritical office to blissfully put her in the van and drive home. Thoughts were racing through my head, I was trying to digest what was said to me, and how I felt about the behavior of the three evluators. I made a vow that we would never set foot in that office again.

My mind is still reeling with everything they said and did. “Are you getting her teeth worked on” after I had just said when she came home from Estonia she had 7 pulpotomies and 4 fillings and 7 crowns placed on her teeth. Proof they were not listening to a word I said. “I noticed that she hates things close to her face, obvious she cannot see up close, but I am not an expert on vision issues…so I don’t know who you could see for her vision”….

Amanda hates things in her face, it was the reason why she used to scratch people, and she left plenty of scratch marks on all three ladies, they had red welts all over their necks and arms. BUT it was not because of autism, it was her vision. I would be ecstatic if I thought Amanda could grow out of autism, or hey, lets add Down syndrome too, because some folks call it a disease, and can’t most diseases be cured?

Oh, what, did you call me snarky? Well maybe I am. I am tired folks, in one breath I am praised “For all I DO for my girls” and right on the tail end I am battered and belittled because I am not doing enough. Which is it then, too much, too little, truly, what parent wants their parenting put under a microscope? I wonder if this woman who sat in haughty judgment of me wants her parenting put under scrutiny. I would love to tell her what I think about her professionalism, or complete lack thereof. I hope their scratches heal without infection, better put some salve on them.

A must watch -Down syndrome Awareness

Spread the Word to End the Word

I am sure I have said it before, I know most of the family has, because it is one of those words that we got used to hearing and accepted as a harmless word, and then Meghan came into our lives and saying it always made me look at her and feel shocked at myself. Here was my precious baby girl smiling up at me, and I was saying I was retarded for forgetting to put salt in the soup? What was I thinking? How could I say such a insensitive thing? Of course I never thought it pertained to children like my daughter, I was thinking more in terms of myself being a mindless idiot who did not use their brain...oh my word, how horrid of me. I am not saying that the habit of using that word left immediately, because that would be a lie, it was hard to break myself it I am rather ashamed to say. It never failed to make me blanch of feel horrified with myself though.

It is a plain fact that Meghan was born with intellectual disability, she learns slower than you and I and she has to repeat things over and over again to memorize their meaning. When we did paperwork for her to enter Kindergarten they gave her a label which included the word retarded. (Thank goodness Rosa's Law* changed that label)

When Kara and Amanda were born, their country also had a label for them to describe how slow they learned, it was oligophrenic, which means small brained, or mental retardation. That diagnosis is why their parents signed abandonment papers and left them in the hospital.

A child born with Down syndrome typically has a degree of cognitive disability, most in the moderate range, some better, some worse. This issue contributes to a 92% abortion rate when there is a prenatal diagnosis of Down syndrome. People are afraid of having a child who will not learn like average children. How will they ever be a rocket scientist, a doctor? President?Perfect?

I think we can all agree that when someone uses the word retard or retarded, they are thinking about children like mine. Most children will poke fun of kids who learn slower (or are different in any noticeable way), and they learn rather quickly that teachers and parents do not get too upset when they use the R word. After all, they hear mommy saying how retarded she is for forgetting to put gas in the car, or they hear daddy saying his boss is a retard. They hear it in movies and TV and no one seems to think a thing about it, after all, it is only a word...ridiculous that the PC police are getting all in an uproar about it, isn't it? NO, not to me it isn't. Words hurt, period.


It is not only a word to my husband and myself, it is a derogatory term that diminishes our three youngest girls humanity. That one word can be the difference between typical children accepting mine in an inclusive setting or laughing at them and making them feel left out and sad. I cannot count the number of times a mother led her children away from my girls saying "Leave them alone honey, they are different". I think the use of the R word in our culture contributes to that attitude.

When we make it OK to use the R word to say we feel less than graceful or when we make a mistake that embarrasses us, we are telling everyone with intellectual disability that they are less than perfect, and we see them as less than ourselves.

Think before you open your mouth, you never know who may be sitting across from you in the movie theater, or behind you in church or school, to you it is just a word, to them it is a dagger to their heart.

*S. 2781, the "Rosa's Law," which changes references in many Federal statutes that currently refer to "mental retardation" to refer, instead, to "intellectual disability"; and

Wonderful interview with Temple Grandin

Amanda and Kara are both non-verbal, neither are vacant children however, autism spectrum mixed with Down syndrome and post institutionalized behaviors, well, it is never boring here :o) Kara was not diagnosed with autism, she does exhibit many of the behviors, Amanda was diagnosed with autism a year after we adopted her.

Bring on 2011

It has been a rough year here, I am sure other families can relate. So yes, I am more than happy to see this challenging year behind us.

I remind myself that each hour we have in this world is a gift, but this year, oh, what a tremendous struggle, mostly financially, that is what happens when wages are frozen but prices of everything else go up and up, and I know we were not alone in this. In many ways it has been better for us than for others.

I am grateful our children have been relatively healthy this year, other than some colds and tummy flu's, we have had a good year.

I am grateful for the gains our three youngest have made in their developmental skills.

I am grateful my husband had a job, budget cuts have threatened his job for two years. 2011 will be another struggle, more cuts in store for our school budgets, prayers are appreciated.

I am very grateful for my continued remission from cancer.

I am grateful for the new daughter I gained this year via our sons Terry's marriage, we Love you Anna.

I am grateful for good friends, especially those who helped us make Christmas special for our little girls.

I am grateful for older children who are giving and caring and understanding.

I am grateful for the food we had to eat, the home we had to live in, and a running vehicle in good condition. More than many people have throughout the world.

I am happy for have all I have, for the blessings of my family and friends and wish everyone a wonderful 2011.

Who is THAT girl?

Or should I say, THOSE girls. Meghan, Kara and Amanda are growing! Yesterday was OT Wednesday, that is when M comes by to work with all three girls on fine motor skills (gross motor mixed in too). M looked at Kara and said; "Kara are you taller?" and by golly, she sure is, I noticed her tops and skirts were getting too short, but all of a sudden she just looks so much bigger. It is time to wash and pack up size 4 clothing and put it away, size 5's are coming out! Kara grows so much faster than Meghan or Amanda. She wore size 3 for about 8 months. Now Meghan wore those clothes for a year and a half. Meghan had too many clothes, and she rarely wore anything more than twice, so Kara got some nice things, and Kara destroyed 1/3 of them by ripping out hems and stretching necklines. I have a pile by the sewing machine, ready to be hemmed again.



Kara is not the only little girl who is not so little, Meghan just turned 10 and I noticed her 7's are too short, 8's still a bit big though, I dislike those in between stages. Meghan is taller, but unlike Kara, not chubby, so she can wear clothes a long time. Kara is a big girl, large boned, fleshy.

Amanda is taller, but she gains weight so slowly, that she looks too skinny, her pants are falling off, and she is eating more again.

Alopecia areata and Meghan

Yesterday, I told Meghan she looked pretty, she said; "I am not pretty" and I said yes you are, and she said, "No, not pretty Mom".

It is her hair loss that is making her sad. I noticed her looking at her head in the mirror for a few weeks, since Buddy Walk. One of the moms asked me what was wrong with her head, and Meghan's hand flew up to the bald spot. Before that she did not seem that concerned about her hair loss, but now, I guess she feels it makes her ugly?

We have never said anything about it making her less beautiful than she is, I am very sad that my girl has become self-conscious about it now.


Meghan lost her bangs this time, this side is always pretty bad, but this was not the worst hair loss she has had because of alopecia, and it is regrowing here. See the fine hair? It is pretty long now, but now she lost all the hair of the same area on the other side, looks similar to receding hairlines of men with male pattern baldness. She also has two 3 inch circular patches of hair missing from her left and right parietal regions.

Meghan 2006

Alopecia areata is a hair-loss condition which usually affects the scalp, for Meghan, it also effects her body, she has no hair on her arms and legs. Her pediatrician and her dermatologist fear she may eventually lose all the hair on her head. She has kept her eyelashes and eyebrows this time, they have fallen out completely before.

Alopecia areata typically causes one or more patches of hair loss, the nape of her neck has been hairless for a couple of years, we do not think that hair will grow back again, but we don't know that for certain. Her condition has gotten progressively worse, she had quarter -sized patches at first, now she can lose all the hair on one side of her head. People stare at her sometimes, lots ask what happened. or what is wrong with her hair. She is noticing their stares and comments now. It breaks mommies heart to see her getting self-conscious about it.

Alopecia areata tends to affect younger individuals, both male and female, Meghan was a baby when she lost her eyebrows the first time. We honestly believed her sister had shaved them off, she was a bit jealous of Meghan and well, there was that time she cut off all the cats whiskers...Julia points out that ha ha, it was not her, how many times can we say we are sorry? :P

Alopecia areata is an autoimmune disorder, in which the immune system attacks hair follicles, that is what is believed, but researchers are not 100% certain. At one point one of her doctors told us that her impaired immune system may make her more prone to leukemia, however I have also read that people with autoimmune issues have less of a chance to get cancer. Since Meghan's maternal great grandfather passed away from leukemia at age 82, we feel there is some reason for concern, but do not dwell on it, why borrow trouble? He was also exposed to nuclear fallout like me, and it is likely that caused his cancer, and my grandmothers too, well, probably all of us. Look up RECA if you want to know more about downwinders.

For most patients, the condition resolves without treatment within a year, but hair loss is sometimes permanent. Meghan has had alopecia since infancy, so obviously it is not going away, and it is getting worse, will she lose all her hair? No one knows.

A number of treatments are known to aid in hair regrowth. Multiple treatments may be necessary, and none consistently works for all patients. We did squaric acid treatments for a few years, it helped. The idea in a simplified way; the squaric acid would be an irritant that would cause her white blood cells to go to that area and try to heal it, leaving her hair follicles alone. It seemed to work, her hair grew back, but after a time, her skin adjusted to the acid and we would increase concentration slightly, we eventually got up to 2% solution, at that point Meghan failed the protocol and we had to choose another medication to fight it. The next step was steroids, we refused them, we do not believe steroids are safe for children and alopecia is not life-threatening, she has not had any treatment for about 18 months.

Many treatments are promoted which have not proven to be of benefit. Since it is an autoimmune issue, there are very few safe treatments, the medical world wants to shut down the over-reaction of the immune system by giving medication that significantly alters a persons immune system, making them susceptible to cancer and infections, we say a big no thank you to these.

We cut out gluten, her skin cleared up, her hair grew back on one side, but fell out on the other. She has thick misshapen toenails from her disorder. They are hard to cut. So far we have not found a good way to combat this using nutrition.
If it is genetic, there is nothing we can do with the current medical knowledge of auto-immune disorders. About 10% of children born with Down syndrome have alopecia, and the alopecia gene is on chromosome 21, hmmm.
http://www.ds-health.com/abst/a0008.htm to read about this.

Hair is not necessary to live, but if you ever lost yours, you would know how badly it feels not to have it. I lost mine because of chemotherapy, but it grew back in pretty quickly, sure it was a weird shade of green, but it grew back (it did return to normal). I have two sons with different types of balding, one with male pattern, and the other has thinning all over his scalp. My husband is losing his hair exactly the way his father did. My maternal grandfather was completely bald and I think Meghan simply had bad genetics where hair loss is concerned.

Kris and Julia, June 2003

Mommy and Meghan November 2003. My hair was about 1 inch long, growing back after chemotherapy. I understand how it feels to be bald, how people treat you differently. I wore a wig so I did not have to answer questions, or have people look at me with pity in their eyes. Meghan cannot wear a wig, she is not bald enough, wigs hurt and itch, I am going to try my hand making her some hats with a circular loom. One of every color! With crocheted flowers!

I am grateful that it is all that is wrong with her, I know it could be much worse, for Meghan though, it is difficult, she will likely never have a full head of hair again.