September at the Davises

One little story:
There once was a little girl named Carolyn. She turned two years old. The next day, she decided she was big enough to go potty in the big potty. Ask her, she will tell you she is six. She left her clothes and diaper behind her and began sitting for long periods of time on the porcelain throne. Ummm… she is going through a lot of underwear AND diapers, but she is potty training herself pretty well, so far as I can tell.

Being a parent throws surprises at you for sure! Crazy kids.

First day of school.

First day of school.

Birthday card!

Birthday card!

Opening the card

Opening the card

Getting ready for ballet

Getting ready for ballet

Adorable tiny bun

Adorable tiny bun

Jordan hanging out

Jordan hanging out

Anna ready for ballet

Anna ready for ballet

Maggie's little girl pink class

Maggie’s little girl pink class

Anna's 'big girl' black class

Anna’s ‘big girl’ black class

Getting Grammy ready to see Papa at the Heart Change silly party was pretty funny

Getting Grammy ready to see Papa at the Heart Change silly party was pretty funny

Carolyn and Maggie's dual birthday party!

Carolyn and Maggie’s dual birthday party!

Bloooooooow!

Bloooooooow!

Here is Carolyn opening her birthday card from Grandma Chapman. Sorry, Grandma… she tore the silver dollar right out of the card!

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Heart Change

My small group

My small group

Last month I got to participate in a personal growth workshop called Heart Change. It was an experience that touched my heart deeply and drew me closer to my Father. We had a “graduation” last night where we had an opportunity to share what God is doing in us. I’d like to share with you what I wrote down to share (and which I did, more or less say out loud). We had a two minute timer, but I went a little long.

Heart Change Graduation:

“The biggest truth that I accepted at the workshop is that God loves me and he likes me. I was convinced of this through both the love from you all [speaking to my fellow participants and staff] and through the Holy Spirit. Thank you T and Jason and everybody for showing and sharing God’s love for me.

Another truth I accepted is that I can accept grace and I can deny condemnation… even for myself. I repeat this truth to myself often. I often actively accept His grace.

Also, God is not disappointed in me. He is lovingly leading me.

Lastly, playfulness does have value. Loosen up! :-)

Second, I want to share what I am still struggling with. I am still struggling with the concept of suffering. How can God be our joy, our comfort and our refuge when He also calls us to take up our cross and follow Him?

I do not like suffering. I have an air conditioned house, for goodness sakes! My car even has air conditioning!

I have been encouraged to not give up, even when I don’t understand.

I keep grasping to know that God is real. If I believe that with my whole heart, then I can claim all of His promises without being held back by fear of suffering.

Here are some things I’m doing to hold onto God’s truths and respond to Him:

  1. I have been using the truths in my dagger to combat the lies I used to believe. (This is something we created during the workshop – mine says: “I am my Father’s beloved daughter. He thinks I am lovely and is pleased with me.” I found Scripture to back that up. Pretty awesome, huh?)
  2. I am exercising three times a week
  3. I am taking Prozac (super humbling for me, people!)
  4. I put up a poster in my kitchen that says, “Thank you God for…” that I can write on during the day
  5. I often think about God’s grace as a waterfall pouring over me, washing away the ropes of condemnation.
  6. I am (often) releasing the pressure of making decisions based upon whether people would be disappointed in me.
  7. We have started having 30 minutes of quiet time most evenings (just started this week) where we read the Bible, journal and pray. That has been really helpful.
  8. The last thing I’m going to do is write down memories of God’s real presence and influence in my life. I can use these like my “dagger” to serve as ammunition against the assailing thoughts about God’s existence.

And that was it! Thank you, Ian and Mac and T and Jason and Fay and Christina and Shelley and Surina and Brenda and Kaellie and Connie and Chris and Greg and Summer and Jackie and and and…. the list goes on and on. I met and got to know over fifty people during the workshop and was blessed by so many of them. Thank you, Lord for the sweetness of your love pouring out through your church. Bless them and encourage them, Father, just like you do me.

Oh – a song that is encouraging me right now:

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August 2014 at the Davises

Ok, I know you don’t hardly see it in these videos, but I grabbed the camera at the end so I could enjoy the “event” thoroughly with my eyes first. Jordan was deliberately making noises (“talking”) into a tube and then putting the tube up to his OT’s mouth for her to make a sound. He initiated this game that we have initiated for him before. But, him making intentional vocal sounds and the turn taking lasting for so long (probably 10-20 minutes!) was incredible. And he was having a rough day too, as you can tell because he’s sitting in a corner and sucking on his hands. But he kept pushing and trying to connect with Joanna. Oh my, but it was a treat. Both Joanna and I were about to cry or cheer or do a dance, but we didn’t want to freak Jordan out. Anyway, Jordan taking turns and making his first ever speaking sounds counts as huge awesome breakthrough, people!

Here he was not “talking” at all, but did keep Joanna making sounds for him. You can here his frustrated/tired whine here and see him request she makes more sounds by putting the tube to her mouth.


I know it only lasts for a second, but at 39 seconds, Jordan made a deliberate sound! He had done quite a bit more of this preceding me getting the camera, but it is definitely a challenge for him. You could just about SEE the thinking going on in his head. He was focusing and trying so hard that day and looked a little surprised and pleased every time he was successful in making a sound in the tube/microphone.

Here is Anna under two of her pieces of artwork at the county fair!  The blue one with butterflies and the one of the pool above that.  So proud of her!  She's proud of her too!

Here is Anna under two of her pieces of artwork at the county fair! The blue one with butterflies and the one of the pool above that. So proud of her! She’s proud of her too!

Yes, Carolyn wants to be in every picture and Maggie poses like this on her own.  The painting with dolphins and glitter in the top left corner is one of her entries.

Yes, Carolyn wants to be in every picture and Maggie poses like this on her own. The painting with dolphins and glitter in the top left corner is one of her entries.

This was the big deal at the fair.  Anna wanted to go on the ferris wheel with Mama until we walked up to it.  It was too big.... but she pulled as much daring as she could from deep inside and went with me anyway!  She tells me she even opened her eyes before the ride was over!  LOVED being on the ride with her myself... made me think of my mom!

This was the big deal at the fair. Anna wanted to go on the ferris wheel with Mama until we walked up to it. It was too big…. but she pulled as much daring as she could from deep inside and went with me anyway! She tells me she even opened her eyes before the ride was over! LOVED being on the ride with her myself… made me think of my mom!

Over to the kids rides!  This is the kids roller coaster and only one of us adults went on.... so Anna sat on her own!  She was as scared as she looks and wasn't sure she liked it once it was swerving around corners, but it was a short ride and her confidence was boosted... I think.

Over to the kids rides! This is the kids roller coaster and only one of us adults went on…. so Anna sat on her own! She was as scared as she looks and wasn’t sure she liked it once it was swerving around corners, but it was a short ride and her confidence was boosted… I think.

Definitely never too old for a merry go round!  My pretty girls.

Definitely never too old for a merry go round! My pretty girls.

Carolyn's very first ride ever!  She was ADORABLE.  She was unsure at first, but once it started moving, a look of wonder was all over her face.

Carolyn’s very first ride ever! She was ADORABLE. She was unsure at first, but once it started moving, a look of wonder was all over her face.

Carolyn loves the tractors.

Carolyn loves the tractors.

The bee exhibit was wonderful!  We could see the queen bee and everything.

The bee exhibit was wonderful! We could see the queen bee and everything.

Err... this is after the fair.  I didn't even have time to dump the green water or remove any clothes.

Err… this is after the fair. I didn’t even have time to dump the green water or remove any clothes.

We went back to the fair one more time with Jordan too.  It was too much for him, so we didn't take hardly any pictures.  But we ate treats and watched several silly shows, including a juggler and diving pirates!

We went back to the fair one more time with Jordan too. It was too much for him, so we didn’t take hardly any pictures. But we ate treats and watched several silly shows, including a juggler and diving pirates!

Joanna Blanchard of Everybody Stims... you have my wholehearted endorsement.  And Jordan's too.

Joanna Blanchard of Everybody Stims… you have my wholehearted endorsement. And Jordan’s too.

Awwww..... love!!!!

Awwww….. love!!!!

I got a rare and special treat last month!  Hollie and her troupe came for a visit!  Oh, it was like a shower fresh water.  Thank you for the visit.  I love you and I love your kids.  Come any time.  Come often.

I got a rare and special treat last month! Hollie and her troupe came for a visit! Oh, it was like a shower fresh water. Thank you for the visit. I love you and I love your kids. Come any time. Come often.

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Jordan Progress Report – Beginning of Kindergarten

Dear Teacher ________,

I tend to ramble a bit, so here is what I will be sharing updates on. Obviously, lots of stuff crosses boundaries between these categories:

Special needs/Summary
Fine Motor
Gross Motor
Eating (behavior and food progression)
Skills
Social
Communication
Play

Special needs/Summary: Jordan has Down Syndrome. He also spent his first 2 1/2 years in a socially and sensory deprived situation in an orphanage, receiving institutional care. He experiences anxiety for often hard-to-identify reasons. (tired, pain, illness, learning a new skill, too much touch, new people, new places, new routines, etc.) He finds touch to be helpful at some times, but usually finds it to be overly exciting. He is challenging to engage, but often applies himself and is always learning. He has a good memory of places and routines. He has a pattern of working hard for a period of time and then needing a few seconds/moments of disorganization/stimming/corner time before he can come back and try again.

Fine Motor: Jordan uses a palm grasp with a strange advanced thumb and palm grasp. We encourage him to use his index finger and he does successfully switch to pushing buttons and playing the piano with his fingertips instead of palm. He very rarely uses a pincer grasp and only with support. He will sometimes draw without hand over hand, but with most “work” he will prefer to throw the object, so hand over hand (or quick reflexes) are a good idea. He is understanding the concept of very easy puzzles and is most likely to be able to manipulate the piece into position if both hands are used. He does not know how to shape sort or color sort yet. He knows how to push buttons and is really motivated to do so for musical rewards, as music or some other sounds are soothing and stimming for him.

Gross Motor: Jordan has a walk and a haphazard sort of run. He can go both up and down stairs holding one hand without marking steps, though it is easier when he closes his feet before the next step. For steep stairs, like the bus, I prefer him to sit down and scoot on his bottom. However, he does not have good awareness of where his body is in space. He struggles to see steps and put his feet onto them. He will often step too far or too shallow, sometimes making him fall. He can navigate stairs on his own safely by crawling up and down (we have stairs in our home) but when standing upright, he should hold onto a railing and/or a hand. He has some strength, but needs more. Finding hilly areas and working on stairs and balance beams and sitting on rocking boards… all those things that help him feel his body in space, build strength and coordination are good for him.

Eating: Jordan is used to eating breakfast around 7am and lunch around 11am. He will have had breakfast before he gets to school, but he will need a decent snack or an 11am lunch before coming home. He could snack while the other kids have breakfast (therapeutically) and eat lunch around 11am (you spoon feeding – making it less stressful… he needs those calories). What do you think?

Jordan eats pureed, homemade, high calorie, thickened soups for his meals. He does not snack much at home, because they aren’t offered much. He also accepts crunchy meltables into his mouth and sometimes cookies. He struggles to know where food is in his mouth, but is getting better at manipulating it and is not much of a choking hazard any more. He has high anxiety about eating and food that has been overcome by a very slow progression of temperature, texture and consistency. He can have texture in his soup (rice, tiny noodles, etc.) so long as he is able to swallow it down without chewing. He does “pocket” chunks into his cheeks and is capable of leaving it there all day. When there is significant food in his cheeks, he struggles to manipulate next bites. I think the next step in texture (per the feeding clinic at OHSU) is to introduce some stringy or fibrous textures.

Behavior wise, Jordan will refuse and become very orally defensive when new foods are introduced. For foods that he likes, he will put more crackers into his mouth before he’s swallowed the last and it can gum up in his mouth. This is his main choking hazard. I feed Jordan his meals with an adult spoon, waiting for him to properly sign “eat” (by touching his fingertips to his lower lip) before giving him the next bite. Sometimes he doesn’t stop signing eat during the entire meal and I have to watch him to see when he has swallowed and when he is really ready for the next bite.

I was hoping hoping that I would work on introducing new spoon-fed foods at home and that you would focus on him learning to self feed. At home, I feed him with a spoon every bite, but he is familiar, if imprecise with self feeding by spoon. It is very important that he request food or have some sort of delay and interaction with you before he gets more and more and more food. It becomes chaotic very quickly if everything is within reach. Anyway, if he could sign eat and practice pointing and then receive a little food and then repeat that, I can visualize success. Examples of good snack foods are applesauce and crackers. Introducing new foods to play with would be really helpful too, though it’s unlikely they’d go in his mouth, maybe his resistance to new foods would decrease if they were present and touchable.

He is good at drinking from a straw or sippy cup. He rarely will drink more than a sip of water, but will finish a cup of juice or watered down juice. If he has had a lot of crackers, taking a drink of water will help him have a cleaner mouth.

Skills: I would prefer Jordan not learn how to take off his pants yet. However, he is learning to assist in putting all of his clothes on, by pushing arms and legs in the right places, using one hand (or both) to assist in pulling clothing up or down as needed. He can especially help pull his pants up.
For diaper changes, I request that he sit down nicely by bending his knees(rather than flopping). Then I prepare my items while he sits. Then I ask him to lay down. I do all of the cleaning and leg movements necessary for him. Usually I have him lay down while not holding any toys so that he doesn’t get too busy and crazy up there. I prefer he pays attention. If it is a poopy diaper, he tends to get giggly when I am wiping him and will sometimes pee during a change. He has some anxiety about diaper changes. After his new diaper is on, I help him “sit up” then put his “feet in” or “pants on” and then I help him stand up and “pull up” his pants. Then we are “all done!”
Jordan knows how to go potty on a toilet when he is placed there and has his feet positioned comfortably (such as on a stool). If you picked one time a day to have him go potty, I would appreciate that. He goes potty every night before bed and sometimes I take him in the morning too. He has a hard time with keeping his trunk upright while sitting on the potty since he has such low tone. If I notice him being a little stinky and I put him on the potty, he will occasionally go number 2 on the toilet. (yay!) He does not have much anxiety about sitting on the potty, though he may try to get down before he is done.

Social: Jordan did not form any attachments or social awareness during his first 2 1/2 years. He is beginning to form the beginning of an attachment with us, his family, but it is not strong yet. He has a little bit of stranger anxiety, but not a safe amount. If you sit down, he will sit himself into your lap. I would like it if he only had that close physical contact with people he sees regularly. I do like that he is learning about affection and the pleasure of relationships, but we need to find ways to help him recognize and practice keeping his distance from people he does not know well. For example, if he backs himself into the arms or lap of a new person, we have found it successful to just direct his bum to the floor next to us instead of directly onto our lap. Another example of social awareness, is that I ask him to turn around and “ask me” if he can “sit down” on my lap before welcoming him into my space. Jordan would resist, but probably respond well to in-hand treatment whenever he is actively involved in anything. (When he needs to rest/retreat/stim, it’s best to be hands off.)

Jordan can often have good eye contact. You will begin to recognize his eyes as being good signals for how he is doing, as he avoids looking at things that are hard work for him. Even putting a puzzle piece in, he will look anywhere else if he is struggling.

Jordan is learning how to give hugs and this can be done appropriately at class time, but high fives would be even better. Or hand shakes.

Communication: When Jordan came home when he was 2 1/2, he had no communication… including barely any passive communication. It has been a real joy to see him become aware of his ability to influence the world around him. His passive communication is back and I tried to explain some of it above in terms of expressing anxiety by turning his eyes away, retreating to stim, etc. He has some semi-active communication going on too. He will sometimes whine when he is stuck, doing something hard or wants something he can’t get. He will sometimes growl when he is angry, unable or refusing. He has a wonderful smile and laugh, but he also has a nervous laugh that comes out as a giggle and is often dangerously close to tears. When he doesn’t want to go somewhere and/or if he is unhappy with you or wants to manipulate, he will sit down instead of coming with you where you are leading. I find that putting a hand under each armpit until he realizes he’s coming with me is helpful.

His receptive communication has really grown. He understands fairly well what these mean: “stay here” “come back” “no no” “hands out” (of mouth or diaper) “sit down” “no throw” “give” “eat” “all done” “more”

His expressive communication is what he is working really hard on. He has a few signs that he can use in context and sometimes needs prompting. They are, “eat” “drink” and “all done” Other signs he’s seen before but has never done without support are “cracker” “apple” (for applesauce) “again” “more” and maybe a couple others. I would REALLY like to know what signs and phrases you are working on with him, as I want to support (and not undermine) anything he does at home. He learned apple at school last year, but I corrected him and told him to sign “eat” because I didn’t know what it was. Thanks in advance for keeping me up to speed!

He is learning to point and to reach for what he wants. Offering choices is so great for him, but he does not understand choices yet. He is on the verge of understanding choices.

A huge breakthrough happened over the summer that is not a solid skill yet. That is that on a couple different occasions, he has made intentional vocalizations into a tube. With his SLP and me and OT, we have practiced making sounds into a tube or empty bucket and going back and forth between his mouth and ours. He loves this, but has not made any sounds while looking into the tube himself. Well… until recently. He is trying so very hard to get his voice to work. I would LOVE it if you continued to support him vocalizing in this way. Baby steps. He will recognize an empty oatmeal container or other cylinder as something for playing this game with. Sounds to start with are muuuuuuuuuuuh, buh-buh-buh and so forth. I am excited for him to find and play with his voice!

Play: Learning appropriate play is such a big deal for Jordan. Learning communication and learning about imagination are big, big things for him. He has done imaginative play maybe three times in the last 2 1/2 years for just a few seconds each time. Once, he put on his grandpa’s hat. Once, he pretended to feed a doll. And once he put an empty spoon to my mouth. I would LOVE for you to support him by setting up very simple imagination scenarios and to demonstrate and help him practice using things appropriately. Oh! He is learning how to brush a doll’s head and then his own head. Body awareness! Yay!

Other things he can do already are: put things in, take things out, clean up (not a fan, though), wiping spills, wiping windows (wiping is hand over hand), rolling or throwing something back and forth, driving a truck/car, pushing buttons, and he has tried to put rings on a tower at the SLP that makes sounds every one he puts on. Lots of structure usually reduces his feelings of chaos.

Well, that’s it! It’s super long. Sorry! Please, can you share it with his therapy team and one-on-one, though? It would make me feel more comfortable as the mom of this little boy to know you have read through this update.


Rachel
Mom to Anna (04/07), Maggie (10/09), Jordan (05/09 – home on 12/03/11), Carolyn 09/12

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Do You See What I See?

Look again!

SAM_7707 (Large)

SAM_7708 (Large)

By the way – this summer with a swimming pool AND an air-conditioned house is just about the best feeling summer ever! It is amazing what not turning into a puddle every afternoon does for you. I have the air conditioning set to turn on at 76 degrees, which I hear is pretty warm, but people, it’s waaaaaaaay cooler than it is outside! And anything below 80ish allows me to keep functioning. (Well, as much as I do anyway)

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