Our Amazing Kids

Although the main purpose of this blog has been to keep everyone informed about Kellin, I think it’s time I devoted a post to my other three amazing kids.

“Rabbit” (our oldest and only girl) is now 12 years old. She is getting ready to enter seventh grade and has turned into such a beautiful young lady. She is now taller than I am (seriously, at 12?!) and thinks it is so much fun to tease me about it. She LOVES to be on the trampoline outside and is often out there several times a day practicing her jumps, flips, turns, etc. It’s amazing to watch her when she’s practicing all of these gymnastics moves; in my opinion, she’s fabulous! She is also terrific with little kids, and she has been working one day a week this summer at a nearby daycare as a helper. AND she baby-sits her brothers for us! Although we’re cautious about not leaving them alone for too long since she is only 12, I feel like we’ve entered a stage of our lives with new freedom. I can run to the store by myself. Or take another child to an activity without taking everyone along. Wow, it feels so strange and awesome! And Rabbit does a great job with her brothers; in fact, Pooh is always asking if she can baby-sit him. She still enjoys reading but goes through books way too fast for us to keep her in new ones, so she often re-reads her old ones. She loves fantasy-type stories and has really gotten into the Dr. Who TV show as well - a great activity for her and Daddy to do together since it’s not on my list of favorites.

“Tigger” is nine years old now and will be entering fourth grade. He’s still just as bouncy and energetic as ever. He loves to run around and pretend all kinds of things, and he loves to be silly (especially if he can make loud silly noises - something that often annoys his siblings). He is absolutely brilliant with Legos and constructs things that I couldn’t even begin to put together. Just yesterday, he created a sword and a scabbard, and the sword really pulls out of the scabbard, AND he managed to string it on a rope so he can wear it. Today he’s decided to construct a large white castle with a portcullis. And yes, these are his words to describe what he’s making. He also loves to read, especially anything that has to do with wolves. He is a wolf expert and can tell you all kinds of facts. He says that when he grows up, he’s going to construct a wolf sanctuary and live there so he can study wolves. Right now, our three boys share a (very large) bedroom, but we are in the process of creating a separate bedroom for Tigger. He’s growing up and is excited to have his own space.

“Pooh” is five years old and will be starting kindergarten. Although Kellin is very much our “baby” developmentally, Pooh is officially our youngest and as such, it’s a milestone for me to send him off to kindergarten, although he is SO ready. Sometime in the last year, this kid figured out how to read and now he reads like crazy. His current favorite books are the Magic Treehouse series (chapter books - at age five - before even starting kindergarten!). He also loves nonfiction books, especially if they talk about animals (his favorite is reptiles). We recently took a trip to a reptile zoo and he LOVED it! Pooh can often be found playing Legos with Tigger, and they have so much fun together most of the time. I suspect that when Tigger moves out to his own bedroom, it will be hardest on Pooh. Although since the Legos are all in the big bedroom (Pooh and Kellin’s), I’m sure they will still play together often in there.

These are three truly amazing kids. When we brought Kellin home 2 ½ years ago, it wouldn’t have been unexpected for them to feel some jealousy or resentment, but I have never seen any sign of this. They all embraced Kellin as their brother from day one and they love to talk to him and celebrate his accomplishments. Even Pooh, who was essentially displaced as the baby of the family, is so loving and sweet to Kellin. I am so thankful for these kids who have been such an example to me in their unconditional acceptance of Kellin and all the intense care his needs require. We are so blessed to have such remarkable and caring children.

A LONG Overdue Update!

I’m not sure if anyone reads this blog much anymore, but I’m going to attempt an update of Kellin’s progress anyway. It’s been six months since I wrote a thorough update.

We’ve had lots of exciting steps forward for Kellin! One of the most exciting is that over the summer, Kellin has pretty suddenly shown a significant increase in weight. You know that weight gain has always been a concern for us, and we’ve really struggled to get him to eat enough to put on pounds. However, in June, we started feeling like Kellin looked chubbier, and he felt heavier when he picked him up. So in July, I took him in to be weighed and discovered that he had gained FIVE POUNDS since his last weight check (only a month earlier), and was over 35 pounds total. Now of course this is still very small for an almost-six-year-old but for Kellin, it’s huge! He is really starting to look healthy. He’s got chubby cheeks, and a little roll on his belly. It’s adorable!

The strange part is we really don’t know what caused the weight gain. He’d been eating a little better but not significantly better, and he was still throwing up on a fairly regular basis. It might have been partly because we introduced a new food - “peanut butter cereal” (cream, peanut butter, brown sugar, and baby rice cereal mixed together) - that he seems to enjoy and it’s packed with calories. Or it might have been because it’s summer and his stress level is lower without school. Or it could have been a combination of factors, or something else entirely; in any case, we are THRILLED!

In terms of eating, we’re still pretty much in the same place we were. He eats his pureed food and his crunchy finger foods, and he drinks his juice. He still needs prompting to continue to eat or he will sit at the table and stim or hold food in his hands without eating it. Although he’s eaten occasional bites of different foods - raisins, cheese - he’s still pretty stuck on the same foods. The one positive is that he is happier at mealtimes. He fusses much less often and goes through many whole meals without fussing at all.

Our other big news is that Kellin is POTTY-TRAINED! He’s been in underwear since May, even overnight, and he’s doing amazing! He doesn’t tell us he needs to go, but as long as we take him regularly, he stays dry most of the time. He has the occasional accident but nothing too out of the ordinary for a newly-potty-trained child. And he’s been dry every single night since we put him in underwear. This is something I didn’t expect he would be developmentally ready for yet, but I am so glad.

So let’s talk communication. No, Kellin still isn’t talking. :-(  It’s not from any lack of trying on our part, that’s for sure. He has a mixed bag of communication techniques to let us know what he wants. Several months ago, I made a tactile request board for him. I took all his favorite toys and put them away in another room where he couldn’t find them. Then I assigned each toy a texture (I went to a craft store and bought all kinds of materials with different textures). I created a tile for each toy with the texture and the Braille word on a small piece of wood. Then I attached the same texture to each toy. All of the tiles were velcroed onto a board on the wall in Kellin’s play area. Then we began to teach him that when he wanted a certain toy, he needed to find the corresponding tile on the board and bring it to us. It took several weeks, but I think Kellin caught on pretty quickly, and he will now walk to this board, scan it with his fingers, and choose the tile for the toy he wants. He’s pretty good at it!

This is the tactile request board.

He uses a few gestures - signs “all done,” nods his head to indicate yes, takes Daddy’s hand and pulls him to the sink to indicate he wants to play in the water, and has developed his own little sign that seems to mean “no.” He uses sounds to communicate as well, but still mostly says “mama,” “ma,” or “ah” to communicate everything. Sometimes he’ll kind of imitate a “ha” sound. We’ve heard a couple of new sounds emerging lately - an “nn” or “nana” sound, a sort of “t” or “ts” sound, and a “dada” sound. He only uses them randomly though, not when we ask him to imitate them. He still resorts to crying or whining a lot of the time when he wants something. Although we’ve started to prompt him by saying, “Whining doesn’t work” and he will often stop crying and try to communicate another way.

Receptively, Kellin understands so much. He follows one-step directions (and occasionally two-step, but it has to be a familiar direction with two related steps like “take off your shirt and put it in the basket”). He understands when we tell him what is happening next, like going in the car or taking a bath. I can tell him when he’s getting down from his chair at the table to head up to the bathroom, and he will get there (all the way upstairs) by himself. He also seems to remember these directions for a while. Sometimes when he’s on his way from one part of the house to another, he will get side-tracked by sunlight or by tapping on something, but even after several minutes, he can get back on track and remember where he’s supposed to be heading.

We are continuing to work on communication in any way we can. We try to make him communicate for EVERYTHING, whether it’s with a sound, gesture, or with his request board. But still, the progress is very, very slow.

In terms of cognitive kinds of skills, Kellin has made some good progress too. He has mastered several sets of simple sorting materials (bumpy/smooth, blocks/balls, hard/soft) and has nearly mastered big/little. I had been trying to work on matching with Kellin several months ago with cards with different textures on them, and it just wasn’t working. So this summer I tried something different - 3D materials that allow him to feel the differences just by picking them up. And it’s been a huge success! Most of the sets use different kinds of balls (bumpy sensory balls, ping pong balls, cotton balls, styrofoam balls) that he can easily feel as soon as he has them in his hand. For each task, I put three baskets in front of him, with all the materials in the middle basket. All he has to do is pick up an object and place it in the basket to the right or left. He whizzes through them now, so I am starting to work on awareness of the concepts of “bumpy/smooth, hard/soft,” etc. by asking him to show me the “bumpy ball” or “soft ball.” He doesn’t have this mastered yet but I believe he will.

I’m also working a lot on counting with him, but always 1-6 in the order of a Braille cell, which is 1, 2, 3 from top to bottom on the left, then 4, 5, 6, from top to bottom on the right. We use a six-hole muffin and tin and practice counting the holes in order and then placing balls into each hole in order. My hope is that eventually, we can form a Braille “a” by placing a ball in the first hole, form a Braille “b” by placing balls in the first and second hole, etc. He’s pretty good at putting the balls in when we go in order, but we haven’t tried out of order yet.

There a few other tasks we work on too. Summer is really the only time I have the time to work with Kellin each day, so I try to take advantage of that. He’s become much more cooperative and will sit and work with me for 20 minutes or more with minimal fussing. This is a huge step forward. In the past, he’s been so resistant to any sort of therapy or “work” tasks.

Kellin is much more independent with moving around. He moves easily around the house, and he has mastered getting from the house to his seat in the van in the garage (and our garage is not attached to the house, so he has to navigate between the buildings also) and from the van into the house when we arrive home. He uses the slide on our swingset independently - climbing up, sliding down, and then trailing along the slide to find the ladder to do it again. It’s pretty fun to watch. He is using his cane more deliberately and actually seems to use it to get information. If it bumps something, he knows to adjust his path or to prepare to step up or down.

Kellin will enter kindergarten this year, which I have mixed feelings about. He is turning six soon so it’s time, but he still seems so little. On the other hand, he attended summer school at his new program and did very well there. He will be attending the same elementary school as his two brothers, which makes me very happy. He’ll have some time in a regular kindergarten classroom but will also spend a lot of time getting more individualized instruction in a special education classroom. I think this is a great fit for him and I’m excited to see what he can accomplish!

As I am a true special education teacher at heart, I always have goals in mind for Kellin. Currently, these are the things that I am hoping he will learn to do within the next several months or year:

1. Use eating utensils independently
2. Use two hands together, especially when he needs to use one hand to locate where something needs to go and use the other hand to place it there - a very important skill when you can’t see
3. Isolate one finger to point at or touch something
4. Use his thumb to help his fingers grab things (for example, when pulling up his pants, he still often just uses his fingers while his thumb sticks out doing nothing - especially on his left hand)
5. Talk!!! Or at least communicate more functionally in some way
6. Initiate the next step in routines without being told (for example, right now I am working on getting him to pull up his underwear and pants, and then walk to the sink after toileting, without being prompted - often he will just stand by the toilet with his pants down until I tell him what to do)
7. Start to recognize some Braille letters and form them with manipulatives
8. Get through his school day without too much fussing or screaming; cooperative in most work activities
9. Start to learn how to orient his clothes to put them on (currently, he only puts them on correctly if I lay them out in a specific way or hand them to him the right way; if they are not just right, he has no idea what to do)
10. Tolerate and chew a greater variety of foods

I think that’s enough about Kellin for now, probably more than anyone really wanted to know. :-)  

As far as the other kids - they’re doing great! Pooh is taking tennis this summer and LOVES it. Tigger tried archery and is thinking he’d like to take some more classes. And Rabbit has been spending hours on the trampoline - I’m amazed watching her jump and flip around out there! And of course, they all LOVE to get out there and swim! More details about them later, but here are some pictures.

So Many Children . . .

It’s been too long! I’ve missed blogging and my plan is to get back into the habit over the summer. I will post a long update soon about Kellin and what he’s doing now so you can see what a difference a family truly makes, but today I’d like to do an advocacy post and highlight a few of the children who have caught my attention. There are still SO MANY waiting children - girls, boys, all ages, and a wide range of special needs, and they all desperately need a family to give them love, education, therapy, and a FUTURE. Maybe one of them would fit in your family! Check out this cuteness and heartbreak.

If you’ve read my blog before, you’ll recognize this little guy (although this is a new picture!):

Known as Quinntavius on Reece’s Rainbow, he’s now five years old. At one point a few months ago, his file had been pulled (making him unavailable for adoption) but he is now available again and in desperate need. His official special needs are a missing right hand and ptosis (droopy eyelid), but he also has significant developmental delays. There is no way to know if these delays are the result of undiagnosed conditions or if they’re the result of neglect and trauma. At five years old, Quinntavius can crawl and stand but does not walk. His recent update did not give any information about whether he is talking. He weighs 24 POUNDS. Our Kellin is just six months older than Quinntavius, and he is still underweight at 30 pounds. Quinntavius needs a family NOW.

You may recognize this little one as well.

This little girl is known as Erin and is three years old. She has no diagnoses, only developmental delays. She does not yet walk or talk, but she does show interest in people and toys around her. She eats from a spoon. Just like with Quinntavius, there is no way to know if her delays are the result of some undiagnosed condition or if they are the result of the institutional environment she lives in. Isn’t she just beautiful?

This little guy is Ethan.

He is four years old and has limb differences (a missing arm and a deformity of the other arm). However, he is described as outgoing, affectionate, and determined. It sounds like he is developmentally on track and doesn’t let his differences slow him down. Look at that gorgeous smile! This little boy is going to be such a blessing to a family!

Now meet Jack.

Jack is two years old and I have to say he’s one of the cutest little kids I have ever seen! He has Down Syndrome and is learning to stand and walk, and is reportedly starting to talk! He is well-liked in his orphanage and is receiving some therapy. He is so ready for a family of his own!

Now how about Gavin?

This little guy is also two years old and his special need is clubbed feet. Clubbed feet are nearly always correctable with therapy, casting, and/or surgery, so this little boy really doesn’t have any long-term medical needs at all! He has an adorable grin and is starting to talk. He is in the care of an excellent foster care facility. Could he be yours???

And lastly, this is Zhi.

He is four years old and is diagnosed with poor vision, developmental delays, and some medical issues. He does not speak yet. Zhi’s caretakers care about him and do their best, but Zhi still spends most of his time in his crib. He loves to jump in his crib! He does not know how to play with toys and unfortunately will likely withdraw more and more from the world around him as he spends months and years in that crib. He needs a family RIGHT NOW.

Please pray for these children. They, like so many others, have no chance of a happy, healthy, productive future without a family to love them and provide for their needs. They need YOU.

There are videos available of some of these sweet children that I would happy to share with you. Just leave a comment!

What Could Have Happened to Kellin

I came across this picture on an advocacy Facebook page yesterday.

This child is a seven-year-old girl who is blind. She reminds me so much of Kellin. She has the same long, delicate fingers and the ears that stick out a bit. :-) This, this is what Kellin would have become had he stayed in his orphanage. Wasting away, frail, and alone. If he had even survived.

This little girl is available for adoption. Her file has been on the shared list, overlooked for years. The shared list is where the files of the toughest kids sit. Agencies can pull files off of the shared list for children they think they can find a family for, so the shared list mainly consists of children whose age, gender, or needs make them unlikely to be chosen.

It will take a special and brave family to choose this little girl. But let’s not forget that she is just a child and needs a parent’s love. Someone who recently met her feels that there is great potential for improvement with love and good medical care.

This child is one of the truly forgotten children, destined to spend her life in that crib unless adopted. There must be a family out there for her.

Happy (Sad) Birthday to Quinntavius

Today is Quinntavius’s fifth birthday. He has now spent half a decade alone.

And what has he received for his birthday? Something horrible and heartbreaking.

Quinntavius’s orphanage has pulled his file. That means he is no longer available for adoption. They say he has “deteriorated” too much for him to be adopted.

I hardly dare to speculate about what this means. But I have heard of other cases when this happened, and usually it was because the child was gravely ill, either from untreated/undiagnosed medical conditions or from extreme neglect/starvation. Both of these scenarios are painful to consider.

I try to remind myself that this doesn’t mean there is no hope for him. Sometimes children are re-listed. Or sometimes if a family steps forward for a child, the orphanage will reconsider.

Although I’ve never met Quinntavius, I’ve prayed for him, advocated for him, loved him from afar. He’s mine, in a special way.

If nothing else, Quinntavius will not be forgotten. If anyone out there wants to join me in praying for him - for his life, for his future - I would be grateful.

Two Years Home

Two years ago yesterday, Kellin came home. He met his daddy, sister, and brothers for the first time, and we took our first picture as a family of six. It has been quite the experience these last two years. And since it’s been awhile since I posted an update on Kellin, I thought this was the perfect time to do it.

So . . . two years home . . . how’s Kellin doing?

Kellin continues to move forward with his development, often in teeny tiny little baby steps, but the progress is there. He is accepting expectations at home much more calmly; for example, he will now go through the morning routine of getting dressed and eating breakfast with minimal fussing most days, rather than crying the entire time. He dresses himself as long as I help him grab the clothes the right way, and then he will put them on. He’s using the potty like a champ, and I suspect that once we commit to potty-training, it won’t be too difficult to achieve. I think he’s probably capable of being trained right now, but I just can’t bring myself to commit to revolving my life around that at the moment. I think summer sounds like a good time for potty-training, right?

Kellin’s eating continues to progress very slowly. He’s now eating a variety of spoon foods, like yogurt, soup, spaghettios, creamed corn, oatmeal, baked beans, and applesauce, and he tolerates the chunks in these foods without any difficulty. He doesn’t chew them at all though. He still seems to believe that any food that comes from a spoon is meant to be swallowed whole, no matter what it is. With a lot of prompting, he will spoon-feed himself, but for the most part he has no motivation to pick up the spoon himself unless told. In terms of finger foods, he eats mini sandwich crackers, apples, and a few kinds of cereal (dry). He drinks juice from an open cup or straw independently. Although I would love to see Kellin chewing and eating a greater variety of foods, I have decided that my priority right now is to focus on self-feeding. I figure he certainly could live on soup, yogurt, and crackers for the rest of his life, but I do NOT want to be feeding him for the rest of his life.

Kellin’s weight is now around 27 pounds. This is down from his highest weight this summer of 28 ½ pounds. He has recently been put on a medication that is supposed to increase his appetite. Although we had the bad luck of him getting sick just days after starting it (so we stopped the medicine for a while), we had a couple glimpses of its potential. One evening I sat down to feed him supper (oatmeal), and even though I usually feed him his supper because we’re both tired of the struggle of making him feed himself by that time of day, he took the spoon out of my hand and proceeded to feed himself about 15 bites of oatmeal with NO prompting from me. I swear my mouth was hanging open with shock. I had never seen him eat with such enthusiasm before. We are now resuming the medication and I am excited to see what effect it might have.

Kellin’s skills in communication are moving forward oh-so-slowly. He nods his head “yes” now, and he makes a sound that I believe means “juice.” He says “mama” sometimes and tries to imitate sounds when we ask him. He still gets stuck on using the same sounds over and over, though. He still doesn’t seem to realize that he can make different sounds to communicate different things. He understands much more than he can express.

We are seeing evidence of some impressive thinking skills as well. We’ve noticed that when he plays with his cube toy (still a favorite after two years!), he always holds it a certain way - green side up, pink and purple sides facing out. We still haven’t figured out exactly how he knows which side is which. At first we thought maybe he was using the on/off switch as a cue (it’s very small but it’s on the edge of the green side) but in observing, he doesn’t seem to be touching that. Then we thought maybe it sounded louder or quieter when facing a certain direction, but we can’t hear a difference. There are a couple of tiny holes for the screws in one side, and we think maybe he is feeling for those, but we’re not sure. In any case, he is picking up on something subtle, because no matter how you hand the cube to him, he will turn it until it’s facing the “right” way. And with other toys - he knows exactly how to find the buttons he wants, even on toys that have many small buttons. I don’t know how many times I’ve tried to turn down the volume on his keyboard, only to have him immediately turn it up when I walk away.

Kellin also seems to be gaining an idea of quantity and counting. For example, if I say he needs to take three more bites, he will often open his mouth for the spoon three more times and then stop. Our stairs have 11 steps down, then a landing, and then another 3 steps. When going down the last 3 steps, he always knows when he’s reached the bottom, even though there is no banister or anything that will tell him that, so somehow he is realizing he’s stepped down 3 steps. He loves to “count” Daddy’s fingers - he will hold one hand on Daddy’s thumb, while moving his other hand to each other finger while Daddy counts. He’s very deliberate in touching each one in order.

His pre-Braille skills are really coming along. Kellin now seems very interested in Braille and moves his hands across it just like a sighted preschool child might study the letters and words on the page. He’s not reading yet (obviously) but he’s showing encouraging signs that he will be capable of reading in time.

Kellin is exploring and climbing more. He walks around daycare and even climbs up onto the table if nobody’s watching. Yesterday at the doctor, he walked around the exam room even though it was a totally unfamiliar place to him. He seems to be more confident.

I’m sure I’ve missed some things, but this is long enough, so I will end with some pictures from the last couple months.

Made with her new 3D pen!

Fancy new shoes for Christmas!

With Grandma and Grandpa

Tigger LOVE LOVE LOVES wolves!!

Christmas at Grandma's - wiped out!

See the cube? Green side up, pink and purple facing out!

Kellin with Grandma

Kellin's great-grandma made this quilt for him. All the fabrics have different textures, and she created his name in Braille on it. It is truly a work of art, and so special for Kellin to have.

Brothers

Sleeping cutie!

Yeah, he climbed up there all by himself.

Kellin's Thanksgiving dinner - spaghettios!

Indoor snowball fight with cousins (not real snow, of course)