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Saturday, September 13, 2014

Evaluations

The ADOS-2, in a nutshell:
We (one twin on one day, the other on the next) went into an unremarkable room with a small table and two chairs. The child psychologist and speech pathologist administered the test. The twins 35 months, two weeks old, at the time of eval.

They brought out various objects and waited to see how he would interact with them.  They asked him to point to his shoes, show where his hair is, point to his nose, etc. For the most part neither boy complied with these requests. They called the name from across the room but neither boy turned to ever recognize the person calling their name.
They asked ME to call their names, and they looked immediately.
They brought out a balloon, blew it up, let it go, and clapped. They waited to see if he would request for the balloon to be blown up again, but both boys just stared and waited for them to blow it up. They did not say "more", or "again", or "balloon", or anything to indicate what they wanted. But they definitely wanted it to be done again.
They brought a baby doll and told them it was the baby's birthday and they were going to make believe to have a birthday party for the baby (meanwhile jackson AND lincoln both are just playing with the baby's eyelids, flipping them open and closed. The woman put plastic plates and cups and birthday napkins on the table for the "party", they produced playdo to make a cake, they put little sticks in the playdo to represent candles, and they asked to sing happy birthday to the baby. Lincoln at this point had already walked away from the table and was pulling me toward the door to leave. Jackson did the same but actually sang Happy Birthday to the baby on his own before he left the table. Needless to say I was shocked he did this.

They produced some more matching items, they brought some food out in tupperware containers (cookies in one, potato chips in the other) and waited for the boys to ASK for the food, or for help.
They weren't quick to bring the tupperware to an adult, and Lincoln spent some time trying to open it himself.
They blew bubbles, and stopped, then waited for the boys to ask for more bubbles.  Both boys said "Bubbles" indicating they wanted more.

They brought out a blanket and hid behind it, trying to engage the boys in peekaboo. Neither boy was interested and instead cried and yelled and pulled on my hand and shirt to stand up and open the door to leave. They gave me the blanket to try to play peekaboo, and immediately each boy started cheer up, laugh, and play with me.

The test then pointed questions at me, one after another about their development, when they crawled, my pregnancy, any complications, etc. They asked if the boys walk on their tiptoes, or seem to be fixated on certain objects, etc. All questions helped to create a score.

They called me a week later to discuss the results. They were lovely women and I knew they only wanted to help. So I waited, and I trusted. And courage stirred, and my faith grew.

Friday, September 12, 2014

Twins with a Twist

9.12.14
I am writing just to write. I have to get my thoughts out of my head and onto "paper". I realize it will be a little while before I actually bring myself to sharing this post.
Jack & Link are just 24 hours from turning 3! Is that possible?!

I don't know why I feel like I have to update the www when our family has any developments. I think it's because motherhood is isolating, and it's like the tree that falls in the middle of the forest. If no one knows what's going on in my world, maybe it's so insignificant it isn't worth knowing about. But when others know, when you know what's happening with me, with us, it somehow brings a little validity to it all. And I think it's because I've been so forthcoming with so much of my heart on my blog, it feels odd to carry any substantial news to myself without blogging about it.
So the update is that the twins are almost 3, and they are delayed in their language by about 1.5 years. They've been in speech therapy for more than 7 months, and we are very grateful for the therapists who have worked with them and brought about their progress, although it is not the substantial gains we were hoping for.
Their speech therapist suggested I have them tested for autism (also referred to these days as Autism Spectrum Disorder, ASD) about 5 months ago, she said she didn't feel confident diagnosing them because she didn't know how much of their delay was a twin thing, and how much they take cues from one another.  I did some research and recognized there were some autistic behaviors that they exhibited, but I decided in my head that if I don't get them tested, then they don't get diagnosed. If they don't get diagnosed, they don't have it.
I know that makes no sense when I say it out loud, but in my head at the time, it was a great way to avoid labeling them as autistic. Ryan and I talked about it again and again and again. We were just unsure of what to do. The workers with Early Steps (intervention support program for babies-2yrs, I contacted a year ago, qualifying them for speech services) told me it took months to get into an autistic evaluation through their program, so I needed to put them on the list now before they turn three. After that we'd have to pay for any testing.
But we didn't put them on the list.
I kept reading, and researching, and watching youtube videos. I went back and forth about getting them evaluated. I gave myself good and bad commentary.


"I don't want them labeled with this for their entire lives..."

"But if they get evaluated  and diagnosed we can finally have an answer, an explanation, to their delays and tendencies, it would explain why it's been so different and difficult trying to raise them!"

"Yeah, but I don't want them to think they are less than perfect, and if they grow up with that label they may not try their hardest or they may think they can't achieve what others can, or others will judge them before knowing them."

"But if they are diagnosed and found to be on the spectrum, they may be able to get therapies that are specifically designed to help them advance!"

"But I don't want to have to explain this to anyone..I feel guilty, and sometimes ashamed. I am horrible!"

"But it's not about you."

"I just don't want them to be autistic--how did this even happen?!"

"They are exactly who God wants them to be, and you are the mom He chose to raise them and nurture them and advocate for them."

"
If, IF they are on the spectrum, it's probably just barely. They aren't severely autistic, for sure...there are probably many kids who don't get evaluated but would be on the spectrum, and they manage...so why subject them to a lifelong label?"

"So they (and you) can get help."

"But I am a professional mother! This is what I do! Look at my first two! I know what I'm doing!"

"Jack and Link are not like Juliette or Lukas. Further, Jackson is not exactly like Lincoln. Each child has their own code, their own personality, and their own weaknesses--each their own path."

"I know. I really do know. But how did this happen?!"

(And I am aware I sound like Gollum talking to myself, but that's really what is sounds like in my head.)

.....

But God knew my uncertainties, and while I worried, I prayed for my boys and for us as parents.
And He had a plan to get me beyond my reservations.
As the boys were aging out of Early Steps, they had to do an exit evaluation to determine if they were eligible for further intervention services through the school district, because starting at age 3, they fall into the jurisdiction of the public school system. So we were just going through the motions. I was confident that their language delays were still enough to qualify them for more therapy. We went, one twin at a time, to be seen by the preschool child psychologist for the district and a speech pathologist for the district. They were wonderful, to me and the boys. We talked about their strengths, their tendencies, their adorable-ness...we laughed a lot--they were just really nice I guess. Or maybe I don't get out much. Either way, at the end of the evaluation, they too suggested an autism eval, I sort of nodded as I had heard this already, but before I knew what was happening they had scheduled them for the following week! I thought it was supposed to take MONTHS to get the ball rolling, and suddenly, it was happening.
I left the building in a daze, all of my trepidation concerning autism evaluation, all my back and forth dialogue about it, my worry, was gone. These two women cast a spell on me! I called Ryan as I left and told him what sort of haphazardly came about, and he too accepted it easily.
The days crept by and finally the boys were evaluated.

It was called an ADOS-2, the Autism Diagnosis Observation Schedule, 2nd edition. To read more about what happened during that eval, jump over to that story, which I cleverly refer to as Evaluations. But in a nutshell, each twin gave a pretty good representation of themselves in that hour, and I knew in my heart what the results would say.

Then more days crept by, and finally Ryan and I had a sit down meeting with a district resource specialist, a school speech pathologist, the same district preschool child psychologist and speech pathologist who administered the evaluation, and an ESE teacher who teaches a 3 yr old class for autistic children. I was already aware of the latter, though I had never met her. She was a finalist for teacher of the year for the district. Just her presence at the meeting already told us what the results of the evals were.

Surprisingly, as we went over the scores and results, I only cried a little, and it was only because at the end of the meeting, after all our questions were answered, they decided to affirm us as parents, for the great job we do and have already done for the boys. Ryan chimed in to say how great I was as their mom, how much he trusts my abilities as a mother. I am sensitive to personal praise and compliments, I get easily overwhelmed by sincere people who can identify the battle scars I have on my heart--those who notice that my armor in that area of my life has been weakened by continuous blows.   My heart has been proverbially beaten over the past year, beaten down mostly by myself and my inner monologue,  but it's also been battered by a lady who kicked us out of her library toddlertime for being twins who jump for joy too much.  From stares at the splash pad that say, "woah lady, you have too many kids and you're in over your head." And even from unintentional parents who have normally developing kids, from those parents that didn't have to coerce or demand that their child learn to love simple storybooks.  Do you see how easy it is for you? When you sing a nursery rhyme your kids don't cover their ears or tell you no, or struggle to get out of your embrace. You parents who just gush over your two year old who is stringing silly words together to make silly sentences that steal your heart. You parents that take for granted each and every time your child utters the word "mommy." I know my boys know how to say it. When I prompt them, they say it. "What's my name???" Mommy!
"Good! What's YOUR name?" MOMMY! :)
But they have never just called my name without being told to.  Ryan says they call my name when I leave, but I've never heard it.  And they have never said their own name when I ask.  And it breaks my heart.
I used to be you, the parent who took for granted how easy it was, recognizing developmental milestones as a God-given right, while I celebrate small successes, or celebrate even if they don't regress.  Or maybe you are the parent who totally knows what I'm talking about, I recognize there are some. Please know I am venting. The websites say I am grieving, resenting, and accepting. But to many it will just sound like I am whining. And I'm sorry. But it's my blog.


I have spent hours looking back at home videos of the twins as they grew. They just look like happy little peanuts, smiling and laughing as most babies do. But I am finding pictures of them lining up objects and rocking back and forth on the couch while watching tv, only interested in very specific shows, fixated on numbers or letters and nothing else, and it suddenly seems so clear. The speech delay was the first flag I actually noticed, but there were little flags all along. They don't make regular or steady eye contact. For about a year they preferred to flip a bike, stroller, or a toy car over and spin the wheels rather than use it as it was purposed. They don't always turn when their name is called, but there is nothing wrong with their hearing. Sometimes they walk on their tiptoes. Sometimes they spin in circles, I thought it was just because kids like to get dizzy. Apparently it's a sign of ASD. They never used their finger to point at anything. At 2 they wouldn't identify body parts on demand, or make animal noises at requests. They don't play make-believe--ever. They repeat words and phrases instead of making meaningful conversation.
"Are you hungry?"
"Hungry"
"Do you want to eat?"
"Eat"
"Do you want a banana?"
"Banana"
"...What do you want?"
"Whatdoyouwant?"
One of them tends to jump around and flap his hands when he's excited, the other one sometimes sniffs objects before he interacts with it. I thought it was just quirky. They love clocks. They love the alphabet. They love shapes. They love rulers and tape measures. ASD ASD ASD.

But they have a lot of strengths that would NOT be considered autistic. They are affectionate. They RUN to the door when daddy comes home, exclaim his name and run into his arms smiling. They laugh and giggle. They love to play ring around the roses with us, they love to play peekaboo and tag. They are not disturbed by grass, water, sand, or dirt, they are not particular about food textures and they eat a variety of foods, from all of the food groups. They are happy when people come over and they are not disturbed by groups of people, new surroundings, or a deviation in their routine.

But it doesn't matter their strengths, because their weaknesses are enough to qualify them for early intervention through the school system. They scored differently, but both boys qualify as having a high likelihood for ASD. And no, they are not DIAGNOSED with ASD. They told me I would need a medical diagnosis for that. But they qualify to attend a special autistic preschool class for 3 year olds, and since they turn 3 tomorrow (Saturday), they can start on Monday. 8:30-3:20. Monday through Friday.

I know. It sounds horrible. My little baby boys, thrown into a class with a bunch of non-emotional children staring at their shapes or into the wall, or being told to practice speaking, throwing tantrums, crying, and upsetting each other all day long, with a frazzled and exhausted teacher who everyday questions her purpose in life and why she does what she does.

And I know this blog is getting long, but my head is going to burst if I don't file some of these thoughts away. So let me finish.
I asked to come see her class first, before bringing them at all. She said to come and check out circle time.
So I did.
I visited the class the day after our meeting. I saw this class in action.
And you know what?
God has GOT THIS.
There are only 6 students in the class right now, my boys will make 8. They have 2 aids, and they keep the ratio 3:1. She has colors and shapes and numbers and patterns and educational toys PILED in every area of the room, from floor to ceiling. She has sheets covering areas and toys that would be a distraction while she focuses on one area at a time. She is organized, passionate, and purposeful.
The other students were 3 going on 4, and most have been in this class for over a year. They were focused on the teacher, they each complied with her requests, they were all verbal, they celebrated each other's successes.  There were 3 girls and 1 boy present, but one of the little girls was taking her very sweet time on the toilet for the entire 40 minutes I was there so I didn't get to see her. An aid was sitting near the bathroom checking in on her. I heard Disney singalongs floating out of the bathroom the whole time. The aid would ask, "Would you like to sing the dinosaur song on the carpet?"
"NO not DONE!" was the reply. The elderly aid shrugged at me and smiled. She said, "We aren't miracle workers, but with patience we see improvements. I've been an aide for over 20 years, and I've never seen a better teacher than this one."

And yes, the teacher is magical. Upbeat and quirky herself, she can relate to the uniqueness of her students. Little to no makeup, little to no nonsense. Her pink teacher apron was embroidered with her name, but also covered in velcro pictures of various classroom activities for the day, and under the apron, a simple tshirt and jeans.  A thick bright green headband kept her long reddish wavy hair out of her face. She moved so quickly from one teaching strategy to the next that I had a hard time keeping up, but she kept them engaged.  She told me she makes it one of her first goals to potty train the 3 year olds that enter class. What?!? You mean not only are you not going to judge me for not having potty trained 3 year olds, but you're going to help me do it!?
She saw fear and hesitation in my eyes when we discussed schedules and dropoffs and pickups, and she comforted me with confidence. She was happy to agree to starting with just halfdays for the boys.  She danced with the students on the carpet, she rejoiced with them in their accomplishments. Music and color and joy permeated every square inch of the room. She reassured me when I sarcastically laughed at her explanation that each child in the class has a schedule that they keep, and my boys would soon do the same. She told me I was a great parent. She told me it was uplifting to see Ryan and I so involved and dedicated to the twins.

And I feel peace starting to creep in.

Despite rising fears and waves of sadness, despite the unpredictability of raising these twins, God has not forsaken me. And God loves Jackson and Lincoln more than I am even capable of, which sounds just ridiculous when I say it, but it's true. He KNOWS the plans He has for them, Plans to prosper them, to give them a hope and a future. And this class, this little preschool class, is part of the plan. I know it.

So tonight, while I'm supposed to be preparing for their 3rd birthday party tomorrow, I am grappling with the implications that my twins have ASD and are starting school on Monday.  My babies start school on Monday. My little cherubs, with little tiny backpacks, are off to be challenged and pushed to learn how to perform like regular 3 year olds do.

I will cry buckets when I drop them off on Monday. I will need extra grace when 8:30am rolls around and I am driving them to be with another adult for the entire morning. I will need encouragement and support from my family and friends while this becomes our new life. I didnt expect to have to deal with these emotions until 2016 when they were actually going to enter VPK.

Please extend us grace in the days ahead. I am learning. Ryan is learning. We are trying to accept something foreign to us and foreign to all I know about parenting.
It will test my faith, all of this will test our marriage, it will test our family and friends, and will test my ability to trust.

I want to pass the tests. And I want YOU to pass the tests.

Thank you for reading. We, as always, appreciate your prayers.

Update: 9.21.14 Today I asked Jackson what his name was several times, and after calling himself Mommy for the millionth time, and me correcting him just as often, he pointed to his chest and said, " "Jacket!"
I'll take it buddy! way to go!



Thursday, September 4, 2014

Goodnight China



I just wanted to let you all know, a few people in China find me amusing, and I can appreciate their fascination with my chaos. And I'm pretty excited about the pageview lovin from the Ukraine, Indonesia, and my 4 friends in France, India, and the Philippines as well. Mediocrity knows no national bias.



Everyone is asleep. I am stupid for not also going to bed. But as all moms know, this time is bliss. This is the time to relax and unwind.  No one is asking me for a drink, no one is crying, no one needs a pencil sharpened, no one needs help putting their clothes away, no one needs a lullaby, no one needs to be disciplined. No one needs pajamas, no one needs to be nursed, no one needs a diaper...When all the No Ones are asleep, it feels like the twilight zone, but it's a good twilight zone.  Going to bed late and losing a bit of that sleep is worth it.  I don't feel guilty being on the computer because after a long day of being needed, no one needs me. No one wants me, and in this case, it's a wonderful feeling!
But the morning will come faster than I'd like, so I'll just say one last thing.
I know very soon, all these needy children will grow up to be more self-sufficient, and you know what? I'll miss No One.  
:)

JK JK.  I miss them already. 


Goodnight WORLD!  
晚安