Alopecia

I'd like to start this post by clarifying that No.....One of my kids did NOT shave Ava's eyebrows off but that would have made one really interesting blog post. :) They have all cut each other's hair at one point or another but thank the Lord they have never taken a razor to each other!

It wasn't until I was reminiscing about our adoption last year, and looking at photographs from our Ukraine trip and of our first visits with Ava, that I realized, she used to have such pretty eyebrows and eyelashes! I'm sure they've been falling out for some time and I haven't even noticed. (I'm not the most observant person.)

So some of you noticed, and some of you had to cheat by reading comments, but yes, apparently the alopecia is affecting her eyebrows and eyelashes too. I took her back to the dermatologist yesterday and didn't get great news.

Alopecia is very very difficult to treat. The younger it sets in the more difficult it is to treat. There are several treatment options but none are extremely effective. We experimented twice on some of the bald patches with steroid creams and injections (which were surprisingly not painful as I thought they would be, Ava didn't cry either time). Interestingly, over the past several months some areas grew in, some areas did not, and even more strange.....the one area that was NOT treated, the bald spot on the back of her head, grew in the best of all. ????? There is another treatment called squaric acid, I think, but the dr. said it can be cause a lot of irritation and sometimes blistering to the scalp, and neither of us felt like we wanted to subject her to that.

So, yes I am sad and yes I am disappointed that she has alopecia, and while part of me wants to give her every chance possible to have a head-full of hair, the other part of me doesn't want to put either one of us through that fight.

We had a family discussion last night and we all agree, Ava is perfect with or without hair, with or without eyelashes, and with or without eyebrows. We will pray they grow back, but we'll take her just like she is and love her the same.

So there you have it. The case of the missing eyebrows. Solved.

On a more positive note, however, she also had a follow-up with the opthamologist yesterday and her eyes are perfectly aligned and functioning very well!!! So yes, I guess her cross-eyed-ness is also missing, and that is truly something to be happy about!

What's missing?

Compare these two pictures, the first is from a year ago, the second was taken yesterday. :(

Thanks Delahne for knowing such neat people who are willing to give our little group tours of their awesome jobs! Last week we met "Miss Roz" who happens to be a well know sculptor in town. She showed us what she does, and then let the kids play around with some of her stuff. My favorite piece of hers is Simeon (from the Bible) holding baby Jesus above his head, as if in worship of Him. I just loved the expressions on both of their faces. (Maybe I kind of like the name Simeon too). By the way, I totally feel like Mr. Rogers as I tell you about the jobs and show you into the world of some of our really special neighbors.






Thanks Delahne and thanks Roz for a really meaningful and special experience. We will treasure these little keepsakes always. The kids' masterpieces are at the very bottom.

More random stuff

Sometimes I think kids would make better bloggers because they really stop and pay attention to little details which make a story.....as evidenced by this picture that I found on my camera that apparently was taken by one of my children. I would have just picked up the pieces of this demolished action figure and vacuumed the rest up but one of the kids thought to take a picture as they found it, and then again after trying to piece it together. This was a wrestler that I bought 2 years ago to make a Nacho Libre birthday cake. I bought twin wrestlers and painted them to look like Nacho and Ramses fighting in the arena. Goodbye Ramses! (Can you there is a big puppy in the house?)



John says I should never have sent this picture in to the Ukrainian Embassy for Ava's annual adoption follow-up paperwork (oh well, too late). I was trying to show them how we are helping her to learn to eventually walk, but John says it looks like we have her in some sort of torture device. :)This is a stander that the physical therapist is recommending we start using for Ava. The purpose of the stander is to position her properly while she learns to bear weight for longer periods of time without slouching or leaning. She hated this the first time....HATED it, but several months later they tried it again and it was a piece of cake for her. For some reason she reminds me of the kid on A Christmas Story, so bundled up to play in the snow that he can't get up.
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 I found this idea on the internet for Liesel's room. Silhouette shapes cut out of scrapbook paper on little canvases. Does it seem strange that some of these "canvases" are the exact size and shape of Rice A Roni boxes and Jell-O boxes? I'm not gonna say for sure, but I do think my great grandma Nellie Dunnivan, the queen of recycling, would be very proud.

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The kids and I had a discussion yesterday about college, and I informed my children that they should think about ways they can raise money for their own college tuition since their dad and I are probably not going to be paying for it. Jude asked, "Mom, do we HAVE to go to college?" I explained that no, nobody has to go to college, but I told him there are some benefits if he decided to go. To which he replied, "I think I'm just going to get a job at Bath and Body Works." I was a little surprised to hear this coming from my mechanically minded boy, so I asked why he'd want to work at Bath and Body Works. He said, "Because a lot of pretty girls go there." (Hmmmmm. Pretty clever boy I'd say!)
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Liesel told me the other day that she wants to adopt a bunch of kids when she grows up. She said she wants to adopt three with Down Syndrome, but first she wants to adopt some "plain" kids so they can help teach the younger ones with Down Syndrome. How cute that she considers herself "plain" compared to Ava's extra chromosome extraordinary-ness.

Five things that made me smile today.....

I loved this idea I read on a blog today (Thanks Valerie), so I thought I would do the same. She says at the end of the day she tries to think of 5 things that made her smile that day. I asked my kids to do the same tonight, and it is so funny to see how our "things" are so different. For example, "It snowed today", would not be on my list of things that make me smile, but it was on every one of my kids' smile list. For me, Snow Days=Lost mittens, boots that have been outgrown, cold hands that need warmed, runny noses that need wiped, water puddles that need dried up, and a big pile of laundry to do at the end of the day.

Despite the snow day, however, I do have 5 things that made me smile today. One for each of my 5 kids.

1. Watching Simeon feed Ava his oatmeal when he didn't know I was looking.
2. Reading Liesel's poem titled, "A Fart".
3. The sound of Jude trying to figure out how to play the guitar.
4. Hope's unmatching gloves....boy gloves, two different sizes, and me convincing her they were supposed to be that way because that was the new style when in reality I just couldn't find any others.
5. The sight of Ava on a snow sled with her stocking cap over her eyes and her tongue sticking out in excitement while her daddy pulled her, then the sight of her little feet sticking out of his jacket when she fell facedown in the snow and he took her inside to warm up by the fire.

Your honest thoughts please....

I would love to hear your thoughts on this. We have been trying to get one of our children seen by the public school system for a minor speech impediment. We have gone around and around, and ultimately the school is refusing to treat our child "because that is their policy". They don't treat homeschooled children. Period. Apparently this goes for children who attend private schools too. According to the law, however, public schools in our state are NEITHER PROHIBITED NOR REQUIRED to treat homeschooled children. So why would they not treat a child, if they are not prohibited to by law, and that child's family is paying their salary? Am I just too close to this situation to see clearly or does this seem unethical? When I asked what options homeschoolers have, I was told we would have to pay for private therapy. We are already paying $540 a month on private therapy for Ava, in addition to her school therapy, so it is hard for me to think of adding more to that when we are already paying taxes, that should, in my opinion, qualify us for school therapy. what am I missing here? Other schools in the area do treat homeschooled children, I am told. So WHY wouldn't they? The only answer we have gotten is that "it is their policy". I am trying to decide whether to keep pursuing this, or just drop it, which is why I would like to hear your thoughts.

This is what the law says:
Although LEAs are still responsible for child find activities to ensure that homeschooled children with disabilities are located, identified, and evaluated, and that a FAPE is available if their parents choose to enroll them in public schools. LEAs are neither required nor prohibited by federal or Oklahoma State law to treat homeschooled children as children enrolled in private schools (because the decision to homeschool a child is a decision to refuse the right to a FAPE, and thus, special education and related services at the expense of the LEA).

By the way, I have no idea what an LEA is.

She pulled up!

Breaking news....Ava just pulled up all by herself to the ottoman (For a cookie, of course.) She did this three times in a row. Yippee! What a girl.

The day I jumped in the Deep End

One year ago today we were in Aretmovsk Ukraine and we sat in the office of the orphanage director and reviewed Ava's medical files, learning the long list of things that were "wrong" with our child. We were asked if we were sure this is the child we wanted, after all, there were plenty of healthy ones available. We were told that her birth father had come to visit her and had decided he would take her back home to live with him in case we decided not to adopt her. Then we walked up the stairs and down the long hall and waited for them to bring us our child, my heart beating out of my chest the whole time.

I will never forget the intensity of emotions I had that day. I have honestly never witnessed anything like it before. When they brought her to me, I was filled with such an incredible love but also the greatest fear that I have ever experienced.

The thoughts that went through my mind: We've waited so long for this moment. She is so frail. So tiny. She looks like she is on the verge of death. I feel like I'm going to break her tiny bones when I squeeze her. She looks so unhealthy. She doesn't look anything like I imagined her. She doesn't feel like I imagined she would. Why is she so floppy? Why won't she look into my eyes? Why won't she smile at me? What if she never smiles at me? What if she can never look into my eyes and say I love you, mama? What if she never learns to roll over and I spend the next 40 years of my life changing her diapers and turning her and taking care of her bedsores? What if my kids resent this helpless little being I bring home? What if my marriage and my family suffer from all the hardship this child could bring to our family? What if this is the biggest mistake of my life? I am not sure I can go through with this. Then again, I certainly can't leave her here.

Long story short, after confessing my fears to John, the biggest relief came over me as he confessed his feelings to me. "I think she is perfect", he said. So what if she never walks? He would strap her on and carry her on his back, and besides, there are always wheelchairs. So what if she never looks into our eyes and says I love you, I'm sure she would tell us in her own way, he said. That was all I needed to hear from him. I just needed to know that his heart was there, and that I hadn't roped him unwillingly into this long term commitment of special needs adoption.

Last night during family movie night Ava sat on her daddy's lap and kept reaching over to me and patting me, signing "mama" and smiling at me. Words cannot even express how grateful I am that we did go through with it after all. She does tell me she loves me in her own way. I can't imagine life without her. She has really enhanced our family in so many ways. I always think of an article that was shared with me shortly after we adopted her and it is true in so many ways. It is by a mother of a child born with Down Syndrome. (You might want to grab a tissue before reading).

Notes From the Deep End
by Jennifer Enderlin Blougouras

...So picture this: Parenthood, to me, was like a giant swimming pool. I saw other people in the pool and they looked okay...

Other parents said to me, "Going into the pool can be really scary. But it is all worth it."
I thought to myself, If they can do it, so can I. And, tentatively, I put my foot in the water.

Suddenly, someone grabbed me from behind and threw me in the deep end of the pool. In the deep end! How unfair!...Throw another person in the deep end...!...

How did this happen? Who did this to me? Gagging and coughing and choking and sputtering, I railed against the shock of the cold water, the unfairness of it all. My head went under and panic set in. I am going to die, I thought. But instinct kicked in and clumsily, I moved my arms and legs. And I did not drown.

Now I was treading water. After a few big breaths I looked around and noticed there were other people in the deep end with me, and they were offering to help. But I didn't want to be in their Deep End Club. And besides, I didn't think I even belonged here. It was only a matter of time before someone told me it was all a mistake and I'd be pulled out of the pool to safety. I should have left well enough alone. I should never have tried to go into the pool, I thought. But since nobody came to my rescue, I continued to tread water. And I did not drown.

Soon I started to float. My panic subsided. I knew I could survive, although it surely wouldn't be pleasant being stuck at this end of the pool. I was able to rest for short periods, suspended on the surface of the water. I felt pretty much alone. Yet, I did not drown.

The I noticed that there was a little boy in the deep end with me, a little boy named Nicholas with eyes that crinkle up like half moons when he smiles. A little boy named Nicholas who loves Bruce Springsteen and Puccini's La Boheme and 1940 Big Band Music. And Nicholas could swim.
Looking at him, I realized that someday, I might be able to do more than float. I might be able to swim. And I might even enjoy it. Perhaps I'd even love it.

As I watched Nicholas I discovered that the deep end allows for underwater somersaults, and in the deep end, it's possible to dive. You can't do that in the shallow end. And I realized that perhaps someday, with Nicholas at my side, we'd both wave to the parents at the shallow end of the pool and say, "You don't know what you are missing, here in the deep end."

A reason to rejoice

I am feeling particularly sentimental tonight for two reasons. One, a year ago today is the first time we sat in the SDA office in Ukraine and burst into tears at the newborn picture we were given from an SDA orphan file....the file of orphanAlina Dmitri Leonova. :)

Two, I have been following the blog of a couple who are adopting from Ava's orphanage.

You probably didn't know this, most people didn't, but when we were in the adoption process, we submitted a request to adopt two children. We had fallen in love with another little boy from Reece's Rainbow named Roman, who happened to be Ava's cribmate. He had blonde hair and blue eyes, and he had cerebral palsy, making him at risk for being sent, at the age of 4, to the same institution where Ava would have gone had she not been adopted. We had every intention of bringing him home with us last year.

However, we later we found out that Roman had two other brothers, a younger in the baby orphanage, and an older one who had aged out to an older orphanage. We also learned that Ukraine's adoption policy does not allow siblings to be separated for adoption. It was all or nothing. We knew we could not adopt them all, so with many tears shed, we left Roman behind, praying that another family would be brave enough to adopt three children at once, and one with a handicap at that.

That seemed like too great a request to ask the Lord but we asked Him many times anyway.

God does answer prayers! Here I am with Roman below.....And now, the answer to my prayers.....the new mother of Roman and his two brothers!!!! Isn't God good? And the best part....Today is Roman's birthday. He is 4. God's timing is so amazing.

The kids and I spent most of our homeschooling hours yesterday watching the Presidential Inauguration. Right before we had read a book about George Washington, by Ingri and Edgar D'Aulaire. My kids didn't know exactly what the word "irony" meant. Some things are better explained by example than by definition and I think "irony" is one of those things. I asked the kids to find the irony in this sentence from the book, (talking about General Washington's return home after leading his country to freedom in the Revolutionary War.)
...... "Washington came home to Mount Vernon on Christmas Day. At the door stood Martha, his wife, with a little girl and boy at her side. They were her grandchildren, who had come to live with her at Mount Vernon. With beaming faces the slaves and servants, too, welcomed their master home."
Yes, the kids did see the irony in that statement. America was free. Not.

So with that fresh in our minds we watched the inauguration, and witnessed history as, 44 presidents later, the first black man was inaugurated into the presidency. Pretty exciting stuff.

I really don't get into politics at all. Rush Limbaugh stresses me out. Presidential speeches bore me. Most political issues I'm either fairly ignorant about, or I can see both sides of. The issue of abortion, however, I can't be neutral about. I am not sure if it is because I am a christian, or because I am a mother, but I honestly do not understand how abortion has even become something that we debate. Whether it is ethical or unethical to kill an unborn child. I know abortion has been justified in many ways and for many different reasons. The most common argument for abortion I've heard is that a woman should be allowed to choose what happens to her body. But the women I know who have had abortions did not really have a choice in the matter. The abortions were pretty much forced on them by their parents or their boyfriends. I've heard the argument that a child is not really a child until it takes its first breath. Then why should a drunk driver be prosecuted for causing a woman to "terminate" her pregnancy prematurely through a DUI accident? And I've also heard it argued that a child's life is valuable only if the mother deems it valuable, after all it is her choice. And almost 90% of handicapped children diagnosed in utero are legally aborted, because of this political rationale. That is a hard statistic for me, the mother of a disabled child, to grasp. Yes, we try to justify this dark and evil deed, just as we justified slavery 200 years ago.

So yesterday, as I watched President Obama, I have to say he is growing on me somewhat. In many ways I think he will be good for our country, for foreign relations especially. But I can't help but think of those poor babies who will never have a chance at life because of the measures he wants to enforce to make abortions more affordable and accessible.....And speaking of irony, did you catch this statement: We remain a young nation, but in the words of Scripture, the time has come to set aside childish things. The time has come to reaffirm our enduring spirit; to choose our better history; to carry forward that precious gift, that noble idea, passed on from generation to generation: the God-given promise that all are equal, all are free and all deserve a chance to pursue their full measure of happiness.... 

(Yes, All are equal, all are free, and all deserve a chance to pursue their measure of happiness unless their mother or some other influential person deems them not worthy to be born).

In one way I feel discouraged, yet in another way I see how far we have come from George Washington's slave-owning days, and I can't help but think perhaps someday soon there will be a victory for the unborn as well. We can hope.

Meanwhile here is a video clip of a 13 year old girl seeking an abortion in a state that requires parental consent, with a hidden camera. This is so shocking....Please take a few minutes to watch it.

Random stuff

We were at Wal-mart tonight (yes, the whole family, is that weird?) and as we stood in line at the checkout the couple behind us were admiring Ava, and they mentioned that they too have a boy with Down Syndrome. We talked for a few minutes and lo and behold, a woman pushed her cart up to our line behind them, and guess who was riding in the cart? A little girl with Down Syndrome. What are the chances of 3 random families standing in a row at the checkout, all blessed with a child with Down Syndrome? Weird.
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My poor kids have to sit patiently for 3 hours every Tuesday afternoon while Ava has speech, occupational, and physical therapy back-to-back. I'll be honest, Tuesdays are the hardest days of the week for me. Having so many children, sometimes I am afraid outsiders are looking for reasons to criticize. This makes me a little uneasy when there are so many mothers sitting in the waiting room every week with nothing better to do than watch how well or how poorly I manage my children. Well today one of the mothers walked in with 5 colorful gift bags and made a beeline towards me. She said she has noticed how well behaved my children are every week, having to sit for so long, and she has been blessed to see how they care for their little sister, and she handed me 5 gifts bags, one for each kid, containing Dominoes, Checkers, Travel Hungry Hippo, Floam, little craft sets, sticker sheets, little animals, etc. etc....things they could do while they waited, oh, and candy. She even gave Ava a little baby doll that says "mama", "dada", "I love you." (which she loved!). Needless to say, I was blown away. So much for my theory about large families in waiting rooms.
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I am on a decorating kick, and I decided to bring the little white toddler bed out of the attic so it would match Hope's white bed (Ava's crib is brown). Besides, I thought it would be good for Ava to learn how to crawl up on and get down from the little toddler bed. How precious she looked laying in her sweet little white toddler bed two nights in a row. Unfortunately, both nights she fell out of bed and was found in the middle of the night crawling around the house in pitch black. I heard the plastic water bottles banging on the floor and I knew right away Ava had managed to crawl through the darkness to find her favorite spot, the little open shelf in the kitchen that holds all the kids' water bottles. When I walked in the kitchen, half asleep, and turned on the light, she looked up, stopped banging the bottle, smiled real big, and said, "MAMA!" Can I just tell you how that melted my heart? So I brought her to bed with me for some snuggle time and she fell back to sleep in my arms for another few hours.
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John and I had a big chuckle last night when I told him to be sure to take the turkey and corn chowder leftovers for lunch the next day. He said, "Do you mind not calling it chowder, call it something else please." I quickly realized that he was referring to the story that I have told over an over again about a home video I once watched with my close friend Jennifer. Jennifer's brother and his two buddies had this crazy idea. One drove the van, one operated the video camera, and the third (Jennifer's brother) walked around a quaint little shopping center with corn chowder in his mouth, pretending to vomit on the windows of stores and cafes. The camera would zoom in through the glass and you could see the horrified and disgusted expressions on people's faces. A couple of people even got up and ran to the bathroom, gagging, not realizing that it was only corn chowder dripping down the windows.

 So, you see, I will never again be able to make "chowder" for my family. As long as I call it "soup", as I did in last night's case (turkey corn "soup"), everyone is fine. I hope I have not ruined corn chowder for your family too.
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Pee Wee's Big Adventure - Bike Flip

Since I have nothing profound to share, I thought I'd post one of my favorite movie clips....for your enjoyment. Sorry I know, he is a total weirdo but I still think this movie is awesome!

If your 4-yr-old brought you this drawing and asked you if you knew what it was....if you were to say "a dog", you would be wrong. If you were to say "a bear", you would be wrong. And you would also be wrong if you guessed a cat, a mom, a dad, a lion or a princess.

The correct answer would be......Chuck E. Cheese, SILLY! (Gee Whiz, isn't it obvious?)

The best homeschool field trip ever.

My friend Delahne is pretty much the best field trip planner I know (said in the voice of Napoleon Dynamite). She got us in for a tour of a local power plant this week. And just wait until next week's...........

If you haven't already seen John's blog about his special moment of bonding with Ava over the weekend, be sure to check out his blog for a really cute blog post.

I just realized this is my 4th blog post in one day. I think that is a record. Maybe I'll do one more before bed just for fun.

By the way, are any fellow bloggers facebooking? Look me up if you are. I have been having fun connecting with old friends from high school, college, even middle school......It'd be fun to see faces from the blog world too.

It has been fascinating to watch Ava's level of language comprehension grow increasingly over the last several months. From crawling to her chair when I say "It's time to eat", to squealing when I tell her "the bus is coming", to going nuts when we turn onto the long gravel road that leads to "home"!

The other day we were driving down the road when she heard a dog bark from outside the car. Ava didn't see the dog but she signed "dog" when she heard the bark. She knew the bark went with a dog. I think that's cool. Also, I started singing the song "Jesus loves the little children" recently. She laughs hysterically every time get to the "children" part, and taps her shoulders. I guess she must hear this song at church and they must do some signs to it? I have no idea, but I know it must be familiar to her the way she responds every time.

When we walked into the therapy place yesterday and her occupational therapist, Rachel, walked by, Ava signed "candy". She knows that is the place where she gets candy (fruit snacks, actually, but I'm not gonna say anything to her about it), for a reward when she does what she accomplishes her tasks correctly.

So here are some pictures of the cool things she has been learning lately. Look what she did when I handed her a baby doll and a toothbrush. I think she is a lefty!






































































Since she is so intrigued by people who wear eyeglasses, we gave her her very own pair in her Christmas stocking. Of course they are plastic, but she has had fun with them. We have all had fun with them. Even me.

Memories....

This is what I was working on a year ago.....

Here is a picture of the Russian Orphan Lighthouse presentation that took place at our church last night. It was moving to see these little kids, ages 7-14 singing their little hearts out, in hopes of finding their forever families during their 10 day stay in Oklahoma. While our family is not in the right place right now to adopt an older orphan, I know there is a family out there who would be blessed to have one of these sweet kids in their family.

One of the host moms, who is adopting two brothers, spoke last night, and I loved what she said. She said she is often asked if it is expensive to adopt. Someone pointed out to her that considering all the years she hasn't been raising them, and all the money that has been saved up until now, NO, it is not expensive to adopt. I loved that point of view. My new friend Julie is hoping to start what she calls her "Yes" fund, gathering donations of $10,000 for grants to help a family say "YES" to one of these older orphans, who will otherwise have an average life expectancy of 18 months on the streets after they leave the orphanage. That is just heartbreaking to me. Remember, even if you can't adopt, you can help another family whose only obstacle is the expense.

A couple of months ago I blogged about the Russian Orphan Lighthouse project. You may remember how disappointing it was to know that half of the kids had to be left behind because they had dystentary (?I think?).

Well this past Friday night we had the privilege of meeting that same group of kids from Russia for the second trip. They were supposed to come in at 10:10p.m. but ended up coming in an hour late. So we kept our kids up super late that night so as to not miss the opportunity to welcome them.

My kids had the idea to make welcome signs. Simeon had the idea to write the signs in Russian. So we utilized Google and tried to make our own Welcome signs, in Russian. After we made this sign I realized it said "Thank you" instead of "Welcome" (At least I think it does?) Since Liesel had worked so hard on it we decided to keep it and pretend we were just thanking them for coming.



We learned that all but one of the kids from the last trip have committed families now! I can't tell you how excited I was to hear that! Apparently the last boy has a family who is considering him but has not fully committed to adopt him yet, so hopefully that will work out for him.

One of the adoptive families happens to be friends of friends, who are local. They were a host family, and they are adopting two brothers, ages 8 and 10. We had the honor, thanks to ou mutual friends, the Marrs, for introducing us, of having them for dinner last week and getting to know their amazing family. We are excited about following their adoption.

Anyway, the Duncan family is hosting again, this time a 13 yr. old boy named Anton. I had the privilege of meeting him Friday night at the airport, and let me tell you, he is such a charmer! Our family is not in a position to adopt a 13 yr. old boy, otherwise I might have snatched him up for myself. See for yourself. Julie gave me permission to link to her blog if you want to follow Anton's 10 day adventure in America.

Meet Anton.

By the way, for those who are local, please join us this coming Tuesday night for the Russian Orphan Lighthouse Presentation at our church at 7:00!! If you need more details, let me know. It truly is not something your family will want to miss.

A triple sleepover

We're having the Palmers over for one last sleepover before they move to Africa. It's 8:30, and nobody is anywhere close to going to bed. And it's a school night (You can do that when you homeschool!)

So I went around the house to see what all the commotion was, and I grabbed my camera just in case there might be a good photo op, and this is what I saw....



















































































Yes, that IS underwear, socks, and toilet paper hanging from the ceiling fan. And in case you are wondering, the boys are making a tornado. I suppose they are trying to imagine what it would be like to stand at the bottom of the vortex and look up like they did in the movie "Twister".

Gosh, I love kids! And what was Ava doing? Sleeping through it all, of course. :)

Calling All Mom Therapists

Here is a question for my fellow mom-bloggers, particularly those who have kids with Down Syndrome.

Ava is doing so well with chewing and swallowing that I have been trying out some new textures and foods. For example, recently she has eaten chicken salad, pizza, raisins, soft granola bars, well, and spaghetti.

Today I gave her a peanut butter sandwich, which I have done at least twice before without any problems. Today, however, she kept cramming bites in her mouth. I thought she was swallowing them but apparently they were all accumulating in the back of her throat and on the roof of her mouth. I had quite a bit of a scare when she stopped breathing and turned blue. Thankfully I was able to reach back and swipe the big wad of sandwich out on the first attempt but it was a disturbing experience. I was glad John wasn't there because he doesn't do well with these things.

I know grapes and hot dogs are choking hazards, and marbles and Legos, and Polly Pockets, and all the other little items that seem to make their way onto my floor and into Ava's mouth consistently.......(Are batteries choking hazards?).....but I never would have expected a peanut butter sandwich to be one! 

So are there some kind of guidelines for what to feed your kids with DS and when? We have had a problem/miscommunication with our insurance (LONG story) and Ava has not qualified for speech therapy for the past several weeks, thus I haven't been able to ask the speech therapist. However I figured somebody who reads this might have some wisdom to share with me.....Please?

Check this out

I send a little notebook in Ava's backpack back and forth every school day to communicate with her teacher. Check out the note I wrote today, and the response I got back.....





































I wonder if she meant "Mama fixed my hair" or if she meant "Mama thinks my bows are pretty too." Maybe she simply meant, "I love my mama!" Needless to say, this note melted my heart!

A pretty girl waiting for the bus

I have been asked whether Ava is deaf, and if that is why we teach her sign language. I have also been asked whether I know sign language or am I learning along with her.

We are all learning sign language as we go, just one word at a time. Ava is not deaf, and apparently contrary to what we thought at first, is not even hearing impaired at all.

The reason kids with Down Syndrome are often taught sign language has to do with their low muscle tone and coordination. Because the extra chromosome affects every cell of their body, it makes everything they do more difficult. At a Down Syndrome meeting we attended one time they compared it to us trying to go about our normal routine wrapped in Saran wrap. Imagine how difficult that would be. The same goes with speech. If you think about it, speech requires a lot of different muscle groups working together properly to make even one sound.

Sign language is an easier way for these kids to communicate until their fine motor skills are developed enough to formulate words that are understandable.

We have a little ASL pocket book and we just look up words as we need to. Ava can use, I think, around 20 signs now to communicate what she needs. I don't know about you, but I find that amazing!

So here is her latest, she just learned this morning as we were getting ready for her first day back at school.....Enjoy!

P.S. Homeschooling

To answer a couple more questions about how we homeschool.....

1. What do Hope and Ava do while we are homeschooling?
They stay right there with us. We do most of our schooling in the living room. I put all of Ava's therapy things down on the floor (wedges, pillows, little stools, toys), and I usually try to play with Ava a little bit while the kids are doing their independent work. The dogs like to hang out with us too and make a great obstacle course for Ava to climb over. :) While Hope is only 4 and not doing any formal schooling, she is extremely intent on learning her letters and their sounds. It must be a girl thing because neither of my boys did that. She does coloring pages, cuts and pastes, writes out "notes" with her letters, and draws pictures for dad to hang up at his office. Our rule is that if someone is distracting you while you are trying to do your work, you have to take your work into another room rather than me trying to make everyone else be quiet or stop wiggling. I guess it works out pretty well for us. I've always said I'd like to be a fly on the wall and watch how other families do this. Since I've never seen the Duggar family reality show (nor John and Kate plus Eight, for that matter), I guess I'll just stick to what is working for us!

2. Our timelines:
Are simply notebooks with date ranges written across the top of the pages. We purchased them used, one is the Sonlight timeline notebook. The other one I'm not sure. We have never done a wall timeline because it seemed complicated to me, and I could never figure out where to put it.

3. The math website which I mentioned, I forgot to put a link to, is livingmath.net

4. The 3 child planner which I use, I was sure came from donnayoung.org, but now that I went back I can't find it. I printed it off over two years ago, and I have just been making photocopies ever since, so if you need me to scan and email to you, I'd be happy to do that.

5. For a couple of people who mentioned they are interested in homeschooling but don't know where to start, I would suggest signing up for a homeschool conference. They are so informative, and you can take a look at so many types of curricula without having to purchase first. There is so much out there, that if you research online it can be absolutely overwhelming to narrow it down. I also love to have company, so if you are local (Ashley and Christina) and want to come over and chat, I would love that!

6. Lastly, I want to remind everyone that homeschooling is certainly not for everyone, and even for us I'm not sure we will always do it. I think there are times and seasons when it is best to take a break or make some changes. I am all about keeping a balance. I believe you can send your kids to public school and still be a good mom! I did it and probably will someday again.

Oh, yeah, and one more thing. I laughed when a couple people said I was organized. I am not sure I have ever heard myself described as "organized". My husband gets stressed out looking in the pantry, but I do have a method to my chaos. I like to think of myself as loosely structured. I like to have a little bit of a plan, but then I like just as much to change my plans midstream. I must take after my dad that way.

Thanks for asking questions. I love to know that people are interested enough to ask questions.

For Stephanie

This post is for Stephanie, and anyone else who might be interested in our homeschooling routine and record keeping.

First of all, I try to choose curriculum that can be taught to multiple levels for two reasons: 1. It simplifies my work load to teach everyone the same thing at the same time 2. More family bonding occurs, in my opinion, when we are learning together.


Obviously, however, there are certain subjects that have to be taught individually, so I have the kids' work divided into two categories, "independent work" and "group work". Each child has a small bin, with their weekly scheduled taped to the top of it, containing all their independent work (Science and Math for all 3 kids, Phonics and English for Jude, English/Grammar and Writing for Liesel and Simeon). Occasionally they need help on their independent work, especially in math, but for the most part everyone knows what is expected of them daily. They are expected to be dressed, teeth brushed, have all their school work done, and have eaten breakfast and lunch before they can play. I don't really care what order these things are done in, I just expect them to be done before they can be going outside to play.


This is a picture of the schedule/record of the week before Christmas. Notice there are 4 sections, one for each kid, and one for our group work (we do together). These are the things we actually did as opposed to the things I planned (the plan is written out in their bins). Notice on the left I have a running list of books to order at the library, characters and events to put on the timeline, and occasionally I'll have vocabulary words to be written out and defined. I put the dates at the top, and at the bottom I write the number of days we have completed (We are a little behind as we took 2 weeks off from the move). I print these pages off from donnayoung.org.


Our group work consists of Bible, History, Art, Poetry/Shakespeare, and Geography. I read out loud and then we discuss as we read. I usually ask questions afterwards, but sometimes I just let them take turns telling me what they remember or found interesting. We also memorize scriptures and sometimes poetry together. Usually at the dinner table, John asks the kids what they learned and they take turns telling him. It surprises me that when they were in public school I never got much of a response out of them, but they are always eager to tell Dad what we are studying about, and it makes me feel like we are on the right track.

These are a couple of the books we read aloud from. If the chapters are short, I'll let Liesel and Simeon do the reading out loud. This helps me hear how they are doing, and they really love it because they get to ask the questions afterward. I guess it makes them feel smart or something!


I really love this particular book! It is old...copyrighted in 1929, there is an inscription on the inside dated 1930 indicating it was given as a gift to a child. I love to imagine who owned the book before and whether they loved it as much as we do! I'm sure most people would find it crazy that I am teaching geography out of a book that is so outdated, but it is so cleverly written, and we like to learn history as it was happening through it. It was fun to read the author speculating that "someday man might even go to the moon." We got a kick out of that. (I know you didn't ask for that but I just wanted to throw that in for free!)

We start around 8:30 or 9:00am and are usually done by 12:30 or so every day, unless we are doing some drawn out art project or something like that but I try to reserve the long days for fun things like science experiments, nature walks or art projects.

We have had many moments of frustration where new concepts seemed too hard (usually math!). It finally dawned on me to have more realistic expectations. I tell my kids I only require two things when learning a new concept: 1. they have to understand it, 2. they have to have a good attitude. Those two 'things' have brought so much peace and I wish I had learned it years ago. As long as they understand the concept they are only required to do a few problems on the page, just to keep up their skills. I usually say something like, "If you can get these 3 problems right, you can be done." This way we are not spending hours doing pages and pages of math problems they already know, but I expect them to all be right, or they have to do more. Make sense? (By the way, I don't "grade", they just get them all right because I make them!)

In case you haven't noticed, math is not really our "thing". For this reason I have decided to spend the next semester concentrating on making math more relevant and fun. Today we learned how to solve the Rubik's Cube using algorhythms (Thanks YouTube).....I should say, we tried to learn to solve the Rubik's Cube. Tomorrow we'll play Monopoly, and I ordered a bunch of books from the library that I found on this website.

Oh, yeah. One more thing. Each kid has their own timeline notebook. Practically everything we learn in history gets put into our timeline notebook. I just search images and print them out, and every Friday we put the pictures on our maps and timelines. For example, The Statue of Liberty came up in our geography book, so we put it on the map and timeline. We studied the Vikings, Christopher Columbus, and the Pilgrims, and they each went on the map and timeline. I love the timeline because it is knowledge that accumulates over the years, and it's fun to look back and remember who/what we studied and how they all fit together in the puzzle.


It's late and I can't think of anything else, but if you have any other questions I'm happy to help. Just remember not to get caught up comparing and thinking you have to do what other people are doing. You know your kids and yourself and what to use and what to toss out. So there you go, Stephanie....(and anyone else who might have actually made it through the end of this long post!)