Wednesday, March 29, 2017

Oops, the Butterfly Is NOT Dead

While mowing the lawn two days ago, I found an injured butterfly. Part of its wing was missing so it couldn't fly and it's body looked a little damaged, too. I made it a nice home in our big glass bowl and watched it. It didn't move much and today it didn't move at all, even when I touched it and moved it, though I thought I saw a leg twitch once. Guess I did, because a few hours later, after telling the girls that the butterfly was dead, it was opening and closing its wings!

How many lives to butterflies have?

Update: April 4
Our butterfly is now truly dead, but it lived seemingly happily in our big glass bowl, eating nectar from plum slices and exploring most of its habitat.

6 Years Home

Yesterday was Jie Jie's Family Day anniversary. It's been 6 years since her adoption. Her orphanage sent us a Chinese New Year card. It's been a great comfort to her and me, too, that she is so loved by those who cared for her, including her birth family (we know this from her finding note).

Saturday, March 18, 2017

Real Life and Cognitive Delays

In my last post, I published the following comment: "I think its a positive thing for Blossom! Not to worry:) it's good to be exposed to all different kinds of people and relationships. It's not something that cm be avoided in the real world. And who knows, maybe she will be able to identify with them and find comfort in that:)"

I have found, as have many parents with children with cognitive delays, that these types of experiences are not usually positive for our children. Here's why...

For a neurotypical child, exposure to all different kinds of people, relationships, ideas, etc... is normally an experience that triggers growth and development. When exposed to something new, questions are asked, discussions ensue, and over time, the knowledge gained by this process is used by the child in how they conduct themselves and how they form their own choices, beliefs, and it's a step that leads to another step in normal development.

For a child with low cognition, it can be confusing, scary and frustrating. In Blossom's case, and the case of my other two older girls, first, they don't have the capacity for speech and language enough to understand a large portion what they see and hear. Second, they can't express themselves verbally in order to have a meaningful discussion about it. Third, they can't process the information correctly since they can't draw on or build on past experiences. Essentially, knowledge and information they are exposed to doesn't accumulate.

For example, would you let a 6 year-old watch a rated R movie? No. Why? Because the concepts are beyond their comprehension, may be scary, etc...

So, when you have an adult or teen with the cognitive level of a 6 year-old, you don't let them watch R movies either. Even physically, if you have a 16 year-old with the fine motor skills of a 4-6 year-old, would you let them stir a boiling pot of food on the stove? No. Would you let them pour dry ingredients into a bowl and crack eggs to bake cookies? Yes, with appropriate supervision.

What I find most people don't comprehend is that it doesn't matter how old my girls get, unless a divine miracle or miracle of science happens, their ability to use their intellect is never going to get any better than it is now. They can learn new things, but they can't use the knowledge at any level higher than they comprehend it and most is forgotten in very short time. Therefore, they don't develop further without a ton of support, hence independent living programs for the disabled which really means, as independent as possible, or, even more true, with as much assistance as they need.

Sissy, now 18, reads words at 3rd-4th grade level (with great effort) and comprehends what she reads at barely 2nd grade level, if that. This is after 3+ years of speech therapy, which has now been cancelled due to a lack of any improvement at all. But, it did help her learn the English language a little better, as it should since she's been here nearly 5 years and speech therapy was very targeted. Unfortunately, the improvements are in written BASIC sentence structure and spelling, not speaking or understanding, and the writing takes her a VERY, VERY long time. However, there has been no improvement in her ability to comprehend WHAT she reads any better.

So, in the instance of Blossom's evening out, she comprehended so little of it, that she found it a bit boring and it's already forgotten. This is a blessing, because sometimes when she's exposed to something that resonates with her a little more, but is still elusive to her comprehension, she has days and days of questions, often the same ones repetitively, and it's a source of stress to her that she can't figure it out no matter how hard she tries, or she gets the concept very wrong and can't understand how wrong.

Sunday, March 12, 2017

Getting Through Church Services

We've still been going to church. All of us. To all three hours of church. It's not easy, but it's been doable.

I figured something out. It's what I do at home to keep the girls positively occupied and productively busy.

I have been printing out bible-themed worksheets for them to do during Sacrament Meeting, the hour and ten minute part of the service that is our church's main worship service and the hardest part for kids to sit through.

I have word searches, cross-word puzzles (easy ones), mazes, and for my littlest one, coloring pages. All are gospel-related. There is so much available for free online!

Something that didn't work very well was letting Blossom join this past week's youth activity. Three of the girls in her youth group were in a school musical and the activity was to go see the performance. I agonized, but with the assurance that the youth leader would give Blossom the level of supervision she needs, I agreed to let her go. Blossom was picked up at 6:45pm and got home just after 10pm looking weary and a bit dazed and definitely NOT looking like she'd had a good time. The youth leader started apologizing to me right away.

Apparently, the musical was much more "out there" than she'd realized. It was an Elvis music theme and was about romantic relationships. One "relationship" theme was that of a girl who dressed up like a boy to be close to the boy she liked and he fell for her, as a guy. Definitely not the message I want to give my children. In the end, the relationships and genders "all straightened out," according to the youth leader, but she knew it wasn't the best thing for Blossom to have been exposed to or even for the other girls in the youth group to have been exposed to. Thank heavens, it seems to have been confusing enough not to have made much of an impression on Blossom, but I can't know for sure. She hasn't talked at all about it other than to say she knows why I don't usually let her go to things like that and that she felt weird being there "with all those other kids."

Next time, I'm going with my gut instinct rather than torture myself trying to "let go" more. I'm often torn because it's hard to know what mainstream experiences they should have or can even benefit from. What I'm learning, is that the older they get, the less mainstreaming they need because they are further and further behind their same age peers since their development has peaked (Jie Jie has a little more developing to go still). What they do need are more activities with others with special needs, but it's hard to find such things.

Sunday, February 26, 2017

We Made It

We made it to church.

It was a busy morning getting everyone ready. Even though my girls are older, they need help, so it's like having a lot of little ones.

It was nice being back and felt right and peaceful.

The aftermath was hard.

Sissy's cognitive capacity and emotional control was high enough for her to understand that her past behavior caused her to have to stay with the babysitter today, but it's not high enough to understand that she can and needs to choose to control her behavior in the future so that she can come with us to church. She can only think concretely. It's very difficult to deal with. So, she wasn't at her best for the rest of today, to put it mildly. I've been patient and loving and made sure to use the "lollipop voice" that she responds to the best, but it didn't work. This week, if I expect her to be able to behave well, I'll have to put out extra effort to keep her busy so she feels like she's accomplishing something.

I spent a couple hours this evening wondering if going to church was worth what she puts us through and I honestly can't answer that question. I am, however, willing to give it a few more tries and see if I can come up with something that works for all of us.

Saturday, February 25, 2017

Back to Church

What does it take to get my family back to church? Oh, yes, we've only been once or twice in the past year. Hard to believe, but that's how hard life has been in my house.

In January, the meetings times changed and I figured out a way to work things out. In my church, services are three hours long. First, there's the main worship service where everyone sits together in the chapel. That's one hour and ten minutes long. After that, the rest of the time is Sunday School classes, then what we call Relief Society for the women, Priesthood for the men, and the youth classes where the young women and young men meet separately. Meanwhile, the under 12 kids are in nursery or Primary, which is part singing/activity time and part Sunday School class time.

It's a long three hours for some, like for my older three girls who can't comprehend the majority of the speaking around them. Blossom loves the social aspect of it and thinks she understands, the result of which is that she monopolizes the discussion time in her classes with very long answers that often aren't relevant. Everyone is very kind and tolerant, though. Sissy sits with "the grin" on her face, that gives the impression of comprehension, but is really her mask that tells means the exact opposite. Jie Jie suffers. She knows she can't understand and the noise of so many voices speaking at once is cacophony to her due to her severe auditory processing disorder, which also involves impairment with instant recall and short-term memory. Apple does quite well since the teachers facilitate so much for the little ones, but when we were going before, she picked up germs every week from all the sick kids parents kept bringing which is actually what began our staying away and showed me how much it stressed us all out. Once we stopped going, the trend of constant illness ended, too. (I'd been thinking it was from speech therapy or OT, but we didn't stop going to those places and on the last day we attended church, I asked the teacher to bring her to me if anyone in the class was sick and they brought her to me.)

All this said, I devised a plan for this year. We'd attend the first hour and ten minutes one week and the last two classes the next week and keep alternating. This would keep the stress on the kids down which would, hopefully, mitigate their frustration at sitting for three hours without understanding. We all know how crabby a toddler is after church and kids with special needs can be the same, no matter what their age, and I just couldn't keep putting us through that.

I decided that this Sunday would be our trial. An old friend said they'd save us a seat and we can sit with them and they'd help me, so I figured that was Heavenly Father blessing me.

Then I realized that two of the girls needed new church shoes - my orthotic and SMO girls, of course. Thankfully, Jie Jie was easy and I found something at the third store we tried. However, no luck for Blossom, and Sissy couldn't handle being out and her behavior got challenging and we had to go home - no dinner out, just straight home before she really escalated.

Going to church was looking grim. Handling the behavior Sissy throws at me just sucks the life and energy out of me. What if she pulls something at church? Now, my mind was occupied with those thoughts that just eat at me. And, Blossom still needed shoes.

After some preparation for Sissy, we all headed out again and braved the mall. How I HATE malls! All that cheap merchandise, disposable clothes, junk food vendors everywhere, perfumes and scented stores. Just UGH! But, I didn't enjoy being around people not related to anything medical or therapeutic, for a change!

6 stores later, Blossom had shoes. The issue with her is fit and the fact that she can't describe the feel of the shoes when she's trying them on, means quite a lengthy process to determine if the shoes actually fit, or if she just likes the look of them. This can be very frustrating for me and tedious for the other girls, since they are just hanging around waiting.

Finally, new shoes in hand, we popped into a popular teen store so I can give the girls a little fun. I pointed out what other teens are wearing, what their purses are like. We looked at clothes and evaluated them for quality and modesty...

Suddenly, I heard Apple crying - her scared cry - and I turned and couldn't see her. My heart stopped beating, the air left my lungs. The crying stopped, she must have been taking a breath, and I didn't know where to look, so I yelled, "Mommy is coming, keep crying so I can find you!" The second she heard my voice, she started crying again louder than ever and a woman yelled, "Over here!" Poor Apple had wandered out of the store and into the mall about 25 feet! She was past the vendors and signs so she couldn't see us and we couldn't see her. I just about died. We've decided that we'll never forget to bring the stroller again! I am also going to make lanyards for the girls to wear when we're out in public with emergency contact info, like my cell number, their name and my name since they are all speech impaired.

The girls recovered and we ate out and finished on a high note, but I was still shaken by the two days of experiences and wondered if trying to get us to church was worth all this.

I still plan to attend church tomorrow. Sissy is going to stay at our babysitter's since I just can't risk her behavior right now. She's been better than last year by far, but she's still unpredictable and for our first day back at church, I need to be able to sit in peace and feel God's presence around me. We're even going to attempt all three hours, but I've told Jie Jie that if she needs to come to me, she can, and we can leave if she needs to.

Monday, February 20, 2017

Time Out for Mommy

I'm sure everyone's noticed that I'm blogging again after several months of silence. What brought this about?

I have more time.

Where did this time come from?

I'm taking 3 months off of work, which is doing daycare, which adds two toddlers to my 4 girls.

I had no choice.

You've seen last October's post on my mail overload. Well, I never caught up. Until now. The mail is now all caught up.

However, there is a TON more paperwork that needs to be done. Taxes, for one, and a multitude of other paperwork pertaining to the girls' medical, therapy, and programs for the disabled, etc......

It all HAS to get done. No choice. And I couldn't get it done with 6 kids underfoot every day. By the time the weekends hit, I'd be trying to catch up on housework, grocery shopping, fuelling the minivan, yard work, pet care, etc.... Add in there lately, holidays and birthdays and you can imagine that this single mama was more than overworked. I was burning out and my brain was fried!

I've been free of my more difficult daycare child for a week and my other one since last Thursday and it's made a HUGE difference. I can't believe how much I've already gotten done and gotten it done without completely exhausting myself.

Thursday, February 16, 2017

Jie Jie's Milestone

Without having done regular updates on each of the girls, I forgot to record an important milestone. Some might not think this is one, but to us it's a pretty big one. Jie Jie finally grew tall enough and heavy enough to graduate from her booster carseat at the age of 12.5 years old! This happened last September. Technically, she can use it until she is 80 or 100 pounds, I can't remember which, but she was psychologically ready to be out of it, too.

Some parents may have gone with the age rule, but with Jie Jie's spinal anomalies and other physical issues, it was safer that she stay in the carseat. It was a Britax with a 5-point harness system that fastened with LATCH or the car's seatbelt through it securely. I'd never use a booster that relied only on the seatbelt to hold the child and seat in place, I've read too many reports of the seat, with the child in it, being ejected from the car during an accident.

Soon, Apple will use this seat, but at 5 years old and only 32 pounds, she's still in a Britax that goes from infancy to 40 pounds and the only reason I'm switching her is that it's be used to it's max factory lifespan. I didn't even turn her forward facing until she was 3 1/2 years old.

Fun at Speech Therapy


My speech therapy girls. Going on three+ years of it now.

Wednesday, February 15, 2017

Happy 13th Birthday, Jie Jie!

Jie Jie turned 13 today, but the fun began yesterday on Valentine's Day when the girls from church came by and "Heart Attacked" her by leaving a trail of paper hearts all over the front yard. Jie Jie followed the heart path and found all the girls hiding, then they came in and had cupcakes.


Tonight, it was dinner with "the gang" then to My Firefighter's house for birthday cake. Jie Jie got the best of both worlds by having a little celebrating with a lot of people, then some celebrating with those really close to her. She helped make her birthday cake, something she wanted to do, so we made an "animal-free" cake which is a very delicious vegan pumpkin cake.

Jie Jie's Heart 4 Heart doll, who she named July, needed winter clothes. Jie Jie kept hinting this at Christmas, but I'd already sewn and shopped for Christmas before she dropped all the hints. So, every night for a week I'd sneak in (or so I thought) and take the doll and make her something. But, turns out, Jie Jie heard me and checked July's position in bed in the morning and saw she'd been moved. Jie Jie said, "I hoped that was what you were doing!" Meaning, she hoped I was sewing things for July.

This cute little guy is about 7 weeks old. We watched him grow in his mommy's tummy from the start. It was a great experience for them as adopted kids to watch that process up close. He's not much bigger than her doll, Bao Bao!


Tuesday, February 14, 2017

Gymnasts


The girls have been attending an amazing all-inclusive sport center I've mentioned before, for just over a year now. It was conceived by a woman who was a competitive gymnast and had a sister with Down Syndrome. She didn't want her sister to miss out on anything so she began teaching gymnastics in her backyard to all the kids in the neighborhood and now, after much effort, has this amazing place. It offers more than I can list: martial arts, archery, ping pong, all kinds of dance, arial ribbon, swimming, veteran's programs, programs to help those who have been paralyzed learn to walk again in case science catches up to their needs, community outreach homework help, and other grant programs such as Fast Forward, which the girls also participate in.

All classes are grouped by age, not ability, and there are plenty of coaches to help everyone. While one child might be a monkey on the bars, another child, such as mine who can grip a bar due to hand deformities, is helped to do whatever they can on the bar, even if it's swinging by the legs. There are kids with missing limbs doing flips, with and without prosthetics. Kids in wheelchairs doing all kinds of things, too. This place is amazing. Every city should have one. Every sport is accessible to anyone and everyone regardless of ability to pay, walk, stand, talk - no matter what.

Anyway, before the Christmas break, the kids spent an entire class learning a little routine to put on for the parents and these pictures came from that practice.

Apple's 5th Birthday Part 6: The Finale

December 1st is Apple's actual birthday and that's when her main present from me arrived. I'd told her the night before that something was going to come in the mail so she was looking forward to it all day. I was excited myself and hoped she'd really love it. I'd been disappointed that it hadn't arrived as scheduled the day before in time for the party, but it worked out well by prolonging the feeling of anticipation.


It's too heavy!


Another baby doll! Baby Calin got a sister.


It's no secret that I love dolls and always have. I think there's such thing as a "doll gene" because my paternal grandmother had it. I think it's connected to the "love rollerskating gene" because I shared that with her, too. I'd been hoping that I'd have a daughter who shared a love of dolls with me and I'm lucky enough that 2 out of 4 do.

The named the new doll Bella and she is an Adora doll, 15" long and weighted to feel more like a real baby. She is precious, her fingernails and toenails exquisitely detailed and her face is super sweet and cute. Baby Calin, which is very recognizable in the Chinese adoption community is a Carolle doll and she's only about 12" tall and has a tiny rosebud mouth. I noticed Apple loved her Baby Calin, but played "twins" with the dolls that are in my daycare toy stash, both of which have open mouths. Over the many years I've worked with children, I've come to realize that the dolls that get played with the most look like real babies (not cartoons or aliens), have soft bodies and open mouths because the thing kids like to do most with the baby dolls is feed them. I'd bought Baby Calin before I realized this, very soon after my dossier was logged in back in April 2007. I didn't adopt Jie Jie until 2011 and she was too old for Calin. I gave her a life-sized Berenguer doll instead, which she still loves and dotes on to this day.

Within hours, Apple fell in love with Bella. It really peeved me when, after just 3 days, the doll started falling apart! She lost an eyelash and the arm was tearing at the joint. For the price I'd paid, this shouldn't have happened, but I had read the reviews and it had been mentioned. I'll post later about the heroics taken to ensure Bella's longevity.


New floor puzzle - done!

Apple's 5th Birthday Part 5: Sisters Turn

All birthday girls, past and future, were also included in the festivities. Everyone was so generous and loving toward the girls. They are the youngest in the set. In fact, the first grandbabies have arrived for a couple of these friends.

Apple's 5th Birthday Part 4: Presents


Her favorites were the doll feeding kit I gave her in the photo above and this tea set.
Even now, these get played with every day.