Tuesday, May 17, 2011

Things Are Changing

Yesterday, Garrett woke happy after sleeping all night. He went to his morning special needs school, then ate, then it took an hour to get him down for a nap that he finally took.....for close to three hours. Then he got up while I was at Ainslee's piano lessons, and Grouchy said he played for an hour before I got home. I came in, asked him to take his Thomas blanket and his two monkey stuffed animals from my room (where we nap) to his room (where he sleeps at night in a twin bed), and a minute later he was like the photo above. I left him there thinking we would soon get up, but he didn't. I put him in bed where he stayed until this morning just in time to get up to catch the bus. This is the first time he has ever done this since he was a little guy on his feeding pump, and then he would fall asleep sitting up and just slump forward and snooze!

But this isn't the only change. We (Grouchy, Garrett's teacher and aides, and I) think we are seeing him experience some regression. Garrett is talking more...using more words, longer sentences, making more statements that make more sense, but I think we have mistaken this improvement with cognitive improvement, but we all think we are wrong. He is processing less and less. He still gets confused when he says YES or NO.....and doesn't even fully know which one to use much of the time. He will say one but mean the other, sometimes going back and forth several times before we figure out what he means. Last week he brought me one of the kittens with a bloody face (kitten, not Garrett), and he could not tell me what happened. Not only could he not tell me what happened, but he couldn't seem to even understand what I was asking. Blank looks, no ideas. Then he also threw up in bed one evening after we tucked him in for the night. He threw up because of this gagging thing he is into. I sat on his bed and remained very calm although I was at my very weakest, most exhausted point of the day. I tried to talk to him about it to explain the gagging causing him to throw up and asking him him why there was throw up in bed to see if he could understand he had caused the throw up by the gagging. But he was seriously clueless. Looked at me like I had asked him to give me a lecture on thermodynamics. It was very sad to see him search my face for what I wanted, to honestly be engaged and paying attention but not even be able to offer a word. I could see the confusion, then the blank stare. I think he is losing some of his ability to process.

I also think we have mistaken mental ability for his using more words. The truth is that he is using more words out of hearing things over and over from others. We are a very chatty household, especially the girls and me, and many of the things he can say, I am not figuring out, are things he has just learned by repetition. Much of this is very good because he is learning new things to say, but it really doesn't go along with his understanding or processing abilities.

What is really sobering is to hear Grouchy bring up the fact that he thinks Garrett is "slipping away from us." He thinks he is getting skinnier again, is very concerned about his physical abilities and now mental things even more, and then the sleep yesterday put an exclamation point on the whole deal and scared us.

He was okay for the first hour or so at school today, but then he kind of checked out for the day, mentally. His last regular school day was today, and then tomorrow is the end of year field trip to an indoor hot springs pool complete with a potluck lunch. Fun!!!

So big sigh that school is out and we have Garrett all of the time. I plan to use our sitter more now he will be home all the time. Also, I think I finished Medicaid application process for the second time this year, and the advocacy group I am talking to says he should get about 5 hours weekly of behavioral therapy and 22 hours per week of developmental assistance....can't remember the word, but basically they pick him up and take him to work on educational stuff, do fun things, or go out into the community and learn to interact more appropriately. It may be glorified childcare, and while I wish like hell we could use these hours to crack his egg and help him snap into our planet, I fear this is the beginning of looking for ways to have him in someone else's care so we can survive.

Today was one of the worst for me so far. It's way too exhausting to live it, then far too complicated to put into words. But Ainslee and I ran errands with Garrett this morning when he got off his bus. Since Ainslee left her McDonalds chocolate milk on the seat beside Garrett's car seat in my Yukon (she had McDonalds for breakfast as a treat as she and I had to spend another hour or three at the Medicaid office for the second day), Garrett thought (or maybe he didn't think at all, more likely) he should open the milk and sling the milk all over my Yukon. That led to cleaning the entire inside of my car BEFORE I could drive into our little town three miles away to get printed versions of my bank accounts dated May 1st for this Medicaid stuff. We ate lunch at a little place in town and headed home for the hour and a half Garrett could nap before I had to take him to therapy and Ainslee to gymnastics and then back to pick up form for Medicaid from the pediatrician and drop it back off at Medicaid. And the little dude WOULD NOT go to sleep.......I know, probably slept too much the night before....but I needed him to nap, too. I needed him to be down and honestly was so mentally zapped that I could have used a nap myself since I knew we had a car ride and long evening ahead. And for the second day of naptime I wept and begged God to save everyone from this. It's just so unfair.

I am trying to keep Garrett separate from his issues, as I blogged last time, but it is just so hard to completely separate the person from the behavior. And tonight, as I have for three nights now, I spent time kneeling by his bed begging God to help me fall in love with Garrett again and to not get frustrated with him for things he has no desire to do. I just feel like I am so down on my little dude, and he deserves so much more. Like today, for instance, I climbed into my bed with him for naptime with a drill instructor attitude, and it didn't help anything. He needs me to be tender with him. I have to try harder to hold it together, stretch my energy farther, and just love him.......love him deeply. Love him like a mom should.



  1. Oh Clara-Leigh, this makes my heart hurt :(

    We are going through a similar understanding that although Tucker has made amazing speech progress, he still can not answer very simple questions. He is mainly repeating things he's heard, or what he thinks we want to hear....his autism therapist said some things to us that I was just shocked to hear...

    I am a little scared by the "slipping away" part, maybe, just maybe, it's an off week for Garrett and next week will be better? Tucker has good and bad weeks, like a roller coaster, as you know.

    I pray the same prayer, that I can love Tucker more deeply and unconditionally like I should....but being his mom is just SO much work somedays, and when they are ignoring your existence or screaming in your face, there is little reason to think things will get better or that your little one loves you back.

    Just saying, call me anytime.


  2. I hope you are having a good day.
    You and your family are in my prayers

  3. KayTar used to using scripting for everything, but she eventually made the connections and is really bright, actually. Her brain just took a different route to get there. Scripting doesn't mean it will ALWAYS be like this for him.

    Do you think he needs more formula? Maybe he's growing and his needs are changing? Usually these things come back to nutritional changes or illness for us.

  4. Clara-leigh
    Your feelings of praying to fall back in love with your child, and trying so hard to separate the behavior from the child are exactly the feelings I fought so hard with when Chloe was younger! I still look back at those years as my refiners fire. The toughest in my 32 years.
    (((Hugs to you and your family)))

    Christina Balzly (mom to Sweden)