Hope for a Bright Future

I can’t believe Javan’s been home for two weeks and things are looking up! He’s really doing fantastic. When we saw his psychiatrist last week, he didn’t think the new meds were helping yet, but I really think they must be. We still have to be constantly vigilant and attentive and things are far from perfect, but major episodes are few and far between. As opposed to previously having several major episodes a day, we may now have two a week! I’ve noticed on these new meds, he’s constantly hungry, hungrier than he’s ever been. It’s like his brain just isn’t processing that his stomach is full. I can tell he’s already gaining weight. If the meds are still keeping him stable, I hope to begin making dietary adjustments in January. I’ll be learning more about the Feingold Diet throughout December and trying to shop differently so we’ll have mostly things you can eat on that diet come January. I haven’t wanted to start the diet earlier because too many changes at once equal failure and also because I like to know exactly what’s causing behavioral changes and changing meds and diet simultaneously won’t allow that.

Our restful weekend went fairly well. We put up our Christmas tree Saturday and he was so excited when he plugged in the lights! We have traditionally-shaped blue lights and then round white lights. He did that happy-gasp thing kids do when they see something that makes them truly happy and said, “BLUE, my favorite color! And disco-ball, my favorite shape!” I love his zeal for details.


We got to visit his Weebo and Pops Sunday. He ate lots, watched tv and cuddled, and was able to play two rounds of UNO happily. Weebo, my husband’s mom, heard his laugh during the game and commented to me that he’s got his natural laugh back – a sound she hasn’t heard since before his birthday in August. It’s so great to see the real him come back, even just to catch a glimpse if him in the middle of a game.

He’s been sleeping more than usual, which is probably also due to the meds and will subside with time. For now, I don’t mind the extra rest. He’s only had one night this week where he’s struggled to fall asleep. That night, we could hear him singing loudly from his room, “Like a good neighbor, Daddy is there!” to the tune of the Nationwide insurance song. Sometimes he’d say Mommy instead. He was getting quite frustrated when we didn’t magically appear before him like the insurance reps do in the commercials. Finally, Dad went in and, guess what…he was hungry. Drat. But he usually falls asleep easily and sleeps for about 9-10 hours a night and then sometimes he still needs a nap the next day.

So far, it’s been a pretty busy week, but he’s done fairly well with it. Monday evening, Rosco’s trainer Hailey came to do the annual public access test that service dogs are required to pass yearly. That required both having dinner at a restaurant and walking around Wal-Mart. That could very well have been a recipe for disaster, but Javan held up amazingly well. He was bouncy and restless at the restaurant, but happy and engaged also. Rosco didn’t even flinch when Hailey purposefully dropped bacon on the floor in front of him and Javan told him to leave it.

We finished our meal and headed to Wal-Mart, which was a little harder for Javan, but still went relatively well. We walked around the aisles and gave different commands or created certain distractions to see how he would react. The only time that Javan had a hard time was the part of the test where a stranger has to come up and pet Rosco. Javan is so fiercely protective of his furry friend and he doesn’t like to share him with anyone. I found an adventurous looking blue-haired man in his 20’s that looked the part and explained to him what we were doing and asked if he’d be willing to pet Rosco. He said “sure,” my husband put Rosco in a sit-stay, and the man pet him on the head while Javan lost his stuffing about it. I was restraining him in a standing position, but apparently not quite far enough away, because he kicked the poor guy. I didn’t even see it happen, busy as I was trying to speak reason to my screaming, flailing 110 pound child, and I didn’t see the man react to it at all so it may have been more of a “kicked at him” or barely kicked him, but I’m not sure. All I know is the dude’s mom, who came out of nowhere, was very adamant that I know Javan kicked him and looked severely reproachful when I didn’t respond in whatever way she thought was appropriate. I apologized to her and her son and thanked him for helping us out and I explained that he’s having a hard time right now. And then I walked off, dragging him with me, knowing she was shooting daggers in my back. Javan got himself back under control and the test ended shortly thereafter.

Rosco passed his test with flying colors. I gotta tell you, that is all due to the excellent, truly exceptional training that service dogs receive at MADE in Texas. These last 4-6 months have been so difficult for our family. Rosco’s training hasn’t even been on the back burner during that time. It was more like stashed away in the metaphorical freezer, awaiting the day when I had time to thaw it and put it on the back burner. We’ve stayed away from public encounters as much as possible and then with Javan’s five hospital stays, Rosco just hasn’t gotten out and had the practice he needs and deserves. But even through all that, his training remained intact. Thank you Hailey and MADE for doing such a thorough job training your service dogs.

So that was Monday. Tuesday morning, we had more evaluations at the school. Javan did ten times better than he did with the previous evaluations. These two ladies who do the testing had noted all the behavioral challenges he’d had in the sensory room during the first test session and instead of just telling him he can’t go back in that room to test, they modified the whole room just for his visit!  They had seen how much some if the sensory equipment helped him and they wanted to give him the benefits of those things, so before we arrived that morning they removed all the tricycles and possible projectiles from the room and left the bigger equipment for him to use during testing. I am completely in awe of the lengths they have already gone to for him and he’s not even a student there yet! Javan’s Daddy also came this time, which helped him because Daddy is the person in the world who makes him feel the safest. The psychologist had remembered to bring him a cookies n’ cream bar and broke off little pieces to give hime throughout as he did well. He actually made it about 30 minutes with mostly good manners, no aggression, and very few peoblems. The second 30 minutes were harder as he got more agitated and began saying and doing rude, disruptive things. They decided just to get to the halfway mark of what they had wanted to get done, so we pushed him to finish that much. So they were able to get an hour total. I haven’t heard about when testing will resume or how much more there is to evaluate him on. I know he’ll have to finish what we started yesterday, do an occupational therapy assessment, and an autism assessment, and there may be even more than that.

Then late last night I check my email and see that the special education coordinator from the school wants to come over to my house along with the behavioral specialist who had observed the school testing. They gave me a choice between them coming this morning or next week. Those of you who know me know I’m not a great housekeeper and I would totally freak out about having school professionals in my home with less than 12 hours notice. Which I did. Freak out. A little. BUT, I know that time is of the essence because we need help sooner rather than later, so I bit the bullet and told them to come this morning for the “this is how we really live special.” And you know, it was really ok. They can help me more if they see things the way they really are as opposed to how I could make things look given time.

I was shocked that he did so well with them here! It doesn’t hurt that all the ladies who work at this school are drop-dead gorgeous. He loves pretty ladies. But still, they were from the school and they were entering his territory, so it made sense to expect him to react poorly to their visit. On the contrary, he engaged in conversation and allowed the adults to engage in their own conversations as well.

The special education coordinator, who he absolutely fawned over, distracted him in the living room while hubby and I spoke with the behavior specialist in the dining room. She asked us lots of questions about which situations he does well in and which ones he does poorly in, how he socializes and with whom, his favorite things and things he dislikes, his routine, etc. She said that from her observations, the most pressing challenge that Javan faces are his sensory needs and if we can work together at home and school to address those needs, many of his negative behaviors will correct themselves and the ones that don’t will be easier to address. She observed that he does show classic signs of high functioning autism and that his related poor muscle tone in his core and hands makes many activities, like writing, very difficult for him. She said paper and pencil writing will never be comfortable for him and at least for the foreseeable future he would benefit from using an ipad or computer in the classroom and using a smart board for big body input while learning. I’d never heard of a smart board, but they sound super exciting! It’s like a gigantic touch pad screen, bigger than a tv, so he can write and do educational activities with the big body movements he needs.

She talked to us a lot about how the behaviors she observed that would be viewed by others as disciplinary issues are really just sensory issues. Simply put, his body isn’t getting the input it needs and he’s seeking it in whatever ways he can.  For example, he will repeatedly swing his hands and arms in my face as if he were going to hit me. She said, “Think about the body movements he’s doing when he does that.  He’s getting large body movement, large  joint movement in his shoulders. Let’s think of another way he could get that movement.” Any behavioral problems that he does regularly, particularly repeated aggressive actions, I’m to think of in terms of, “What is his body getting out of this? What’s a healthy replacement activity he could try that might give his body the same input?” Its not really about me or the dogs or whoever he’s aiming his aggression toward; it’s about his body’s needs. He isn’t consciously aware of that and therefore can’t verbalize his need, but he’s seeking the input nonetheless.  And she talked to us about putting him on  a regular sensory diet to preemptively head off many of those behaviors. In short, a sensory diet is regularly scheduled sensory activities, tailored to his specific needs, that will give his body all the necessary input it needs for his brain to operate properly.

So I asked her what she thought about him going to school and being in the R&R behavior room. She said let’s just take it slow. We don’t need to decide right now exactly where he’ll need to be when. We need to take a few steps back first. She observed how he was actively forming a relationship with the special education coordinator in the living room. She said, “She’s not placing any demands on him. She’s not expecting him to perform in any way. She’s just forming a relationship of trust. He’s very wary, very cautious and can be paranoid. That’s what he needs furst, before ever ‘going to school.’ He needs to build a relationship with a teacher here at home. Then begin working on academics with that teacher at home. Then be in a one-on-one classroom setting with that teacher in the school. Then we can think about which room would benefit him best. Life Skills or the behavior room,  or a combination. We’re going to have to be creative and flexible to find the best situation to fit his needs.” Well, blow me over. Again, the flexibility and willingness to go to great lengths to create the very best situation for my child just astounds me.

She talked to me about the life skills room and how their learning is very practical and hands on. They learn math through cooking. They learn through board games. They recognize that these kids won’t learn the same way as everyone else, so they boil down the same academic concepts those other kids learn to their very essence, and then teach those concepts in ways these kids can learn. And, now this I did not expect, both ladies said that they felt like Javan would eventually be able to join the general education population. Maybe not for everything, maybe not for core academic subjects, but maybe for P.E. and science and things like that.

The behavior specialist told me she sees a bright future for Javan. That about brought me to my knees. It’s been a while since I’ve heard such hope from any professional. It gives me back more hope of my own.


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