Monday, May 30, 2016

The Hardest Thing About It All

The amount of repetition.

The amount I have to repeat to them.

The amount they repeat to me.

And how absolute LITTLE they are able to retain and truly learn. So little progress is made for an absolutely tremendous amount of effort spent. It is so discouraging. By the time they finally do seem to reach a new level, the relief out-weighs the joy.

My oldest child has only about 6 different conversations. They vary a little now and then, but it's the same, day in, day out.

My second oldest child has about 12 different conversations.

My second to youngest tries to converse, but with expressive and receptive issues that are HUGE, she often can't complete what she starts verbally or an invented word pops out that makes it impossible to understand what she's getting at.

None of my three older girls can relate an experience back to me in a logical way. "How was your activity?" I asked after picking them up from youth night at church. "What did you do?" Thus begins a comedy routine (only it's not funny) of them trying to tell what happened. The other night it went just like this...

"I liked it."

me: "What did you like?"

"The movie."

me: "What was it about?"

"Those Indian things."

me: "What?"

"You know, those things you showed us before."

me: "Can you describe it?"

"Indian people things. Those things they live."

me: "Native Americans or people from India?"

"Not from India, from old times."

me: "Teepee?"

"Yes, tee hee."

me: "Teepee."

"Tee Hee."

me: "Tee Pee, with a p."

"Tee PEE."

me: "What about the teepee?"

"The other one knocked the door."

me: "What other one?"

"The other one."

me: "There were two teepees?"

"Yes. No, the Noah thing."

me: "The ark?"

"Yes, the art."

me: "arK"


me: "arK, with a K."


What it seems happened after listening to two of the girls describe the video this way but each describing a different scene, and from what I saw at the end of the video, is this...

The video took place at church girls' camp. The girls set up teepees to sleep in. Some girls followed the instructions and some didn't. It began to rain and the teepees that weren't set up right began to leak, sag and collapse. Some girls ran to other teepees and asked to share and some girls (the other ones) ran to alert the leaders whose cabin looked like Noah's Ark, hence they had to "knock the door" or, in proper grammar, knock on the door.


Joannah said...

Oh, my! I couldn't help but chuckle, but that has got to be frustrating. I'm sure it was once amusing, but now it cannot be. Those girls are so blessed to have you raising them. I pray you will be given tremendous amounts of patience and good humor. :)

Anonymous said...

It breaks my heart that this has now gone on so long without diagnosis, treatment, and respite. Elementary classroom teachers know that "repeating" as you describe, signals a child with huge needs, a flag for substantial evaluation, especially for autism.

You have probably already thought of this, but- assuming Apple is not on the spectrum, and from what you've written about her, it seems not- she needs substantial time away from her sisters and your necessary-at-this-point repeating and frustrating conversations with them- so that Apple can continue to develop normal language patterns, involving all of listening, speaking, and thinking.

K said...

This has broken my heart, too. How many times have I told the pediatrician they are delayed and not doing well? How could the school psychologist do their evaluations and IEPs and NOT find special education needed for two of these three girls? It was finally our geneticist who started the ball rolling, but, it's really our pediatrician who failed by not sending us to the right departments within the Kaiser system, things I didn't even know existed. I kept saying the same things but no one listened. I finally get right in front of the specialists and say right to their face, "I need you to listen to me and hear what I'm saying and do something about it."

K said...

Another thing about the language issues...

So many people just kept saying it was ESL stuff. All they see when they looked at my girls were little kids, not their true ages. This was VERY, VERY detrimental. It's also not even that they are small, it's their mannerisms more than anything. Waitresses still offer my 17 yr. old a child cup even though I've seen many young women just as petite.

Catherine said...

Just curious. Will Apple start attending Kindergarten in the fall?

K said...

No, at least not in public school. She's a Dec. 1 birthday (she'll be 5) and I'm not into the whole pre-k or transitional kindergarten thing. I missed her first 19 months, I don't want to miss an unnecessary year. I've pretty much decided to homeschool her, though. In fact, I'm really looking forward to it, and we're going to start some fun things this week actually. She's ready and eager to learn more now and showing signs of reading readiness which I'm super excited about. I think she's going to LOVE to read.

Anonymous said...

This is in response to your comment about your pediatrician and school specialists who didn't diagnose Sissy's autism (and to any other parent who might be facing the same issue). Pediatricians and schools ARE NOT qualified to diagnose autism. As you mention, K, autism is a neurological disorder on spectrum, which means only qualified MEDICAL (not psychological) professionals can give a official diagnosis which will qualify them for services. A pediatric neurologist is an example of a qualified person. The testing process is arduous, with lots of observational data collected. When my child was diagnosed it was after almost 6 hours of testing and surveys from teachers, both parents etc.

DO NOT RELY on teachers or even your family doctor for a diagnosis.

You'll find K, that if Sissy or any of your other kids are indeed on the spectrum, it won't be them changing, sure they might get behavioral therapy, but the specialist work with you more. You'll need to change how you communicate and how you parent your girls. I made PECS strips from information I got on the web and clear packing tape so my child could understand what was coming next and would stop repeatedly asking the same question over and over. I learned to use visuals for EVERYTHING, taking a bath, brushing teeth, going to the store. And of course, used repetition and consistency.

Good luck!

K said...

The problem I have with our pediatrician is that I went in repeatedly with issues related to developmental delay. She even filled out and signed forms for programs. But never once at all did refer any of my children for evaluation and when I finally started requesting more help, it still didn't get us to the right specialists, but it did get us a little further along. Now, after meeting with a State Disabilities Specialist, and having Apple's clinic team listen to what was going on with my other girls, things are finally moving in the right direction.

It's impossible to ask the right questions when I don't know what to ask for and no one is forth-coming with anything useful. For example, I didn't realize that our regional center can provide behavior specialists that come into our home and, like you said, help me try different things to help the girls. I didn't know that such a thing exists. I just found out last month. I REALLY could have used this last year! I'll still probably have them come out to see if there's anything more I can be doing.

I've tried visuals and my girls forget to look at them and/or don't notice them. It's the darndest thing you ever saw. In Sissy's case, she can't look at a picture and process what's happening in it. She can, however, be able to memorize what's happening if we explain it to her several times, but that still doesn't mean she'll notice it every day.