Thursday, October 2, 2014

How fares my Chicagoan?

Sorry I haven't posted about my Teeny Man in a long time.  I've received such a flood of adorable videos and pictures of him from his adoring auntie and baby-sitter - I had to transfer them from my phone to my computer, and then I had to go through them so that this post doesn't have 70 pictures on it.  (And BTDubs, Lex, that doesn't mean I want you to stop the flood.  Allow the flood to continue. May it flood for the next three months.)

Gage is doing SO WELL.  Example of what he said when he wanted chocolate milk before he went to Chicago:  "Ka-cut mikk?"  Example of what he said the other night when he was snuggling with Lex - "I want a-Chris a-make a-chocut milk."  Incredible.  He's using enormous sentences - SPONTANEOUSLY.  Without prodding or needing to imitate.  Here is one of my favorite videos of him.  He spontaneously said, "I have a cute bumb."  And Lex laughed so hard that he kept saying it over and over again, so she caught it on video for me:

I mean, don't get me wrong - he still often needs a sentence modeled for him.  He'll say one or two words to say something he needs.  Say he wants goldfish crackers.  Sometimes he'll still say "Goldfish."  Or "Goldfish crackers."  So then Lex will say, "Say, 'I want goldfish crackers, please!"  So then he'll imitate that sentence, and then she'll give him the goldfish crackers.

How do I know this?  Well, Lex and I talk at least every other day, and I FaceTime with her 3-4 times per week so I can talk to Gage.  Sometimes he wants to "talk" - which mainly involves him poking where he sees my nose on the phone screen and giggling, or leaning his head into the screen so I can give him a kiss.  But sometimes he's like, "I'm done talking with Mommy and want to play with my trains." (He says this in his head, of course.  He's not using sentences that are that long!) The other day, we were FaceTiming, and Gage got bored of me, and he had seen Chris take the dogs out to the front yard, so he ran over to the front door and yelled, "Kiss!  Hey, Kiss! [Chris]" It was really funny. He loooooves Chris.

So when Gage loses interest in interacting with me, Lex and I will talk, and I'll see her interacting with him and take mental notes on how I need to be with him when I get him back.  I want him to transition easily from Lex to me, and I mean to ape everything she has done to help him get as far as he has.  He'll have the same routine as he's had with Lex.  I don't want to unintentionally undo everything she has gotten accomplished with him.

What I also need to do is get my hands on some literature on autism.  I need to go to the bibliotheque. Knowledge is power, I say.  I want to know all I can do to help him.

As far as food, Lex has decided to have Gage go gluten free.  Her text will explain it better than I can:

"I took Gage to my holistic doctor and he said Gage is gluten intolerant.  Most kids are, but especially kids on the spectrum.  Research shows that when they go gluten free, behavior vastly improves because their GI system and neurological system feel better.  So we got all gluten-free snacks and food and some detoxing juice that improves brain and neurological function."

I'm completely uninformed about gluten-free eating, so I've been asking my friend Kathleen lots of questions.  I probably should also get some books on how to eat gluten-free.  I might as well put my whole family on it.  Sadie has GI issues, so it will help her.  And it will probably help Ben and I lose some weight.  This is all after I'm done with chemo, of course.  I don't want Gage to see the kids eating snacks or food that isn't gluten free and have to tell him no, he has to eat these other snacks...I want it to be a normal way of life for everyone so he doesn't feel deprived.  I'm going to have to try to find a way to afford it, too...our income has decreased dramatically with this new job change, so it will be difficult.  But I'll find a way. I have to.  For Gagie's sake.

Lex got Gage into this INCREDIBLE preschool.  From what I understand, there are only 8 kids and 5-8 adults in there.  And the adults are the teacher, her aide, a child psychologist, and several different types of therapists - occupational, developmental, physical, speech...  It sounds amazing.  He qualified to go four days a week for 2 1/2 hours per time.  We had to retrieve and e-mail Gage's assessment to get into Special Preschool last year and also his IEP, and the eligibility lady in Chicago was like, "Um, this is the worst assessment I've ever seen and this is the worst IEP I've ever seen." His IEP had him receiving hearing services, but at the time he started preschool, he could hear.  His tubes were in his ears.  And "receiving hearing services" meant that a lady from the school from the deaf would come observe him at school once a month, and she would come to our house and use instruments from the 1980s to test his hearing, which involved him wearing big heavy earphones which he was NOT a fan of, and the ability to signal when he heard a noise, which he didn't understand.  It was ridonk.

His IEP also gave no indication of receiving speech therapy.  I mean, this whole situation he was in makes me furious, but what really frosts my cookies is that I was begging them all last year for Gage to get speech.  And they kept saying, "We can't give him speech services until his speech emerges." I said, "I've got to believe that part of speech therapy is helping that speech to emerge..." and they said, "No, it has to be present before they can do speech therapy."  Which I found out was a BIG FAT LIE.

Basically, the school system here failed him.  Terribly.  And it makes me so mad that I could punch people.

Now, I don't know if maybe our district didn't have funding for speech therapists to help speech emerge?  All I know is that my daughter, when she was three, qualified through the school district for speech.  And she had total sentence fluency - just couldn't say several sounds correctly.  Yet, somehow, my son who had only maybe 5 to 10 words last year couldn't qualify through the school district for speech therapy.

The great thing about this school that Gage is in, is that now, he will have a proper IEP and a proper eligibility assessment.  We can take these documents, which are done CORRECTLY, to Bend and hand them over and get Gage into the proper preschool and therapies that he so desperately needs. I've learned a lot from this experience - the main idea being that I need to be more of a powerful mama.  I need to tap into my mother bear reserves.  And if he's not getting the help he needs, I have to arm myself with research and the law and fight for him.

So right now, Gage goes to this preschool, he goes to several different therapies every week, including hippotherapy, which he LOVES.

They don't have Gage ride in the regular manner.  They have him ride on his tummy, perpendicular to the horse's body.  Kind of like a sack of flour resting across the horse's back.

The reason they do it this way is that Gage needs vestibular motion.  He's always jumping, hanging upside down, and turning around and around to get dizzy.  This is his way of "resetting" himself.  When he's had enough of certain sensory input - especially noise - he does these actions to kind of make himself feel better in some way.  Sensory issues are a big part of Gage's particular "brand" of autism.  So when he's riding this horse, his head is almost hanging down, and it's getting movement back and forth, back and forth, as the horse walks.  This "resets" him and enables him to focus and do well when he's doing his therapies.  This hippotherapy place is actually where my sister works.  Coolest job ever.

Gage adores hippotherapy and especially adores a horse named Teddy, who is a gorgeous fjord horse.

He went on a playdate a few weeks ago, and they had an enormous stuffed horse at the house.  He got onto it just like he does at hippotherapy - like a sack of flour.  So cute.

Gage has a baby-sitter just a few times a week for a few hours each time, since Lex works.  She found this incredible baby-sitter who is actually working toward some kind of certification in autism. So she is perfect.  She sends pictures every time she watches him, and they're always doing something fun.  She took him to the Insect Museum there in Chicago - I'm sure it was like hog heaven for my little budding entomologist.  They go to different parks and do all kinds of neat stuff.

Gagie's current obsessions - bugs and Thomas the Train.  He has two Thomases, a Percy, and a James.  He knows all of their names, and when someone comes home, he says, "You hold Percy," or "You hold James."  So Lex and/or Chris will have to hold this train and carry it around with them.  If either of them puts the train down somewhere else, Gage insistently tells them that they have to hold the train.  Which I'm sure Lex and Chris love. :)  Haha!

One of the coolest things Lex has instituted for Gage is the use of transition boards.  You have a binder with velcro strips on it.  On the strips are pictures of different activities - brushing your teeth, taking a bath, going potty, etc.

Then you have laminated chipboard or cardstock with velcro strips on those.

When it's morning, you put in order, from top to bottom, the things you need to do.  So you'll maybe put the picture for "go potty" at the top, then "put on clothes," etc.  This really helps kids with autism in their transitions.  They have a hard time transitioning from one activity to the next.  I always had to drag Gage kicking and screaming out of the bathtub.  But after his bath, you show him the transition board and say, "What's next?" and he looks at it and sees the picture, and it might show a picture for "put on jammies," so then he goes, "Put on jammies!" and he willingly gets out of the tub to get dried off and dressed in his jammies.  After each activity, you or he takes the picture off the velcro and puts it back on the velcro on the binder.  It's sooo cool.  I have a video of Lex and Chris working with him on his transition board, but part of it is Gage going potty, and you can totally see his pee-pee in it, so I'll just keep it in my files. :)

Oooh, a really cute thing I almost forgot about - when someone gives him something he's asked for, he's encouraged to say "thank you," but he forgets if he's supposed to say "please" or "thank you" when he receives the object, so he just melds them together and says, "Thank you please!"

So yeah, I have a lot to learn, and I'm going to need to adjust my parenting to include all of these necessary things to help my kid reach his optimal potential.  But I'm excited to do it.  I needed the tools to help him, and I didn't know what he needed or what his exact issue was.  Now that I've got the information I need, I can make the changes I need to help him.

And Lex, I've said it before, and I'll say it again, thank you.  Thank you for helping Gage.  The things you've done for him will affect the rest of his life for the better.  You've made a huge impact on him and on our family.  I love you. :)


Mindy H. said...

Wow! Lexi and her hubby are such blessings for you and your little man. I am so glad he is doing so well! And the horse therapy is so cool. Reading your posts always make me so thankful for inspired minds that are able to find ways to save and change lives.

Carrie said...

I second that WOW! Lexi has really gone the extra mile to bless Gage. What a relief for you to know that he is in such good hands and that she and Chris are making progress with him that will be critical moving forward. Wow, wow, wow! What a sister!

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