Here’s to 2012

2012 is looking promising so far. I write this with a smile on my face while I listen to my son giggle relentlessly while cuddling with his daddy and watching a Minecraft video. Minecraft has become a new hobby of theirs and provides real bonding experiences for them both. It is a computer game where you get a random, computer-generated world with which to do as you please…build a castle, mine for diamonds to make superior weaponry, grow crops, breed animals, make little mushroom houses like the Smurfs’…the possibilities are endless.

We’ve gotten Javan on the right meds for the time being (after much trial and error…and trial). We knew the Risperdal is working well, that’s the mood stabilizer. But we also knew we needed to add something to it to control the extreme hyperactivity. ADD medicines have never been our go-to meds because we always get horrible results. We tried the one the psych really wanted us to try, well we tried it twice actually, with two distasteful results. The first time he was aggressive and angry and self-injurious. Not dangerously so, but enough that it was an immediate negative. The second time, he talked non-stop. By this, I mean, it was physically impossible for him to stop talking. About anything, everything. It was exhausting. Brief trials with immediate positive or negative results are blessings because they mean less time guessing.

Next, we moved on to Straterra, with immediate positive results!  He is still hyperactive, but it’s controllable. And he’s happy. That’s my favorite part. Within two days of beginning the lowest dose of this medicine, which he’s still at until we possibly increase next week, family members were asking me out of nowhere if Javan was on some new medicine. They couldn’t help but noticed how much more in tune with his surroundings and happy he seemed. Yay! I love positive feedback from family, well any feedback but especially positive! It gives me assurance in knowing if we’re doing the right things with his meds.

Thanksgiving went well. At that time, we were not doing so hot on meds or behavior or much of anything. So, instead of holding the family gathering at our place as planned, a blessed aunt took the load for us. Our little family was so tired and stressed and it just seemed that a family holiday at our home was doomed to certain failure. We didn’t have high hopes for him to do well at her place either, but then we could always escape to our safe bubble of a home. However, he did surprisingly well. He was polite and mostly obedient. Not perfect by any means. But we were with family and we could relax a little. He spent a fair amount of time under the table, which means sensory overload, but it was happy time under the table, not upset or stressed. He ate well and conversed with others happily.

After dinner, we put in a favorite movie of his (Winnie the Pooh for those who were wondering), and the whole family joined in watching. It is quite entertaining if I do say so myself. This part was harder for Javan because he expected everyone to watch and see all of his favorite parts and not miss a laugh. Instead, there was the usual family visiting and sharing. This frustrated Javan immensely, but we were able to quietly explain (again and again) that the family was together to visit as well as share the movie and it was okay if they missed some parts or if we didn’t hear everything because we could watch it again at home later.  I think, and feel free to correct me if I’m wrong family members, that we were even able to avoid many others knowing he was frustrated, that was how well he controlled himself.

Between Thanksgiving and Christmas (I dont’ do dates well if you haven’t noticed), we visited Dallas for two doctors’ visits, both at Dallas Children’s, which of course could not be scheduled on the same day. So we stayed overnight in Dallas to see two doctors (who were literally across the hall from each other) on two separate days. Sheesh. Anyways, the first day was gastrointerology…or for those of you not comfy with long medical terms, the poop doctor. He’s a good doctor, and I really got along with him well last time we saw him, and this time I guess, but this time I fell into the general category of “some people.” This is a gentle doctor’s way of saying “you” without saying “you.” It was with a gentle tone and sympathetic eyes that he informed me that “some people” come to medical professionals with difficult situations and expect them to just “fix it.” And sometimes those people have a difficult time understanding and accepting that there is no fix. In other words, Javan does not throw up often because he has reflux, but because he has autism. He throws up because his neurotransmitters don’t respond properly to certain stimuli in the stomach and esophagus and also because of being constipated often. He is constipated often not because of any problem in the GI tract, but because he has autism. Because his neuropathways are criss-crossed and he interprets the body’s signal for needing to poop as pain. We know this because if it were a problem in the gut he would present with growth delays and failure to thrive. Javan is a big kid. He is in the 95% percentile for both height and weight, meaning he’s not overweight, he’s just big. He always has been. As a result, I have always heard from every doctor that it cannot be GI related, it must be brain or will related. I’m terribly sick of hearing it. I guess I really am one of those “some people” who don’t easily accept that the only “fix” for her son is to be on laxatives and acid reducers every day for the rest of his life. He’s been on them since he was 1. The rest of his life is a long time. Give up? Hmmm…wonder what Temple Grandin’s mother would have to say about that. Now there’s a woman who I admire.

The second day was endocrinology. That’s the doctor who deals with hormones. A few months ago, Javan was found to have low TSH – thyroid stimulating hormone. Hypothyroidism in the making…not really a huge deal and makes sense based on family history. Basically, his brain is not sending enough signals to his thyroid to produce enough thyroid for his body. The doctor said we would monitor his bloodwork over the next several months to see if it develops into hypothyroidism or if it was a fluke. Good news is we can do the blood tests through his local pediatrician and we only need to go back to the specialist if the results are not normal.

Christmas. Oh, let’s talk about Christmas! We really braved it. A family road trip from Texas to Indiana with Weebow, Pops, Mom, Dad, and Javan. In one car. Two hotel stays, one on the way there, one on the way back. Five days, four nights at my hubby’s brother’s house in Indiana. In other words, once we hit the road we were trapped for better or worse. No matter if the whole weak was one huge autistic meltdown. We knew that going in.

Let me just say. He. Did. AMAZING. Better than any five year old – no matter their neurological or medical situation, no matter their personality, no matter their attention span – could be expected to do. We knew that he was typically a good long trip car rider. But even that couldn’t be guaranteed, so it was a super pleasant surprise when he followed through with that precedent. He’s never been a great hotel sleeper, and he still wasn’t. In fact, he (and I) slept horribly in the hotel. But, really, so what? We were back on the road the next day for 10 hours or so. Plenty of time to rest.

The big kicker was how well he did with his new and unfamiliar surroundings in Indian and with all FOUR of his cousins! We knew the way they interacted would either make or break the trip. His cousins are 8, 6, 2, and 5 months. Two girls, two boys. He falls smack dab in the middle in age and we all know how well he does with kids his own age. (Not good.) The two youngest are the boys and we also all know how well Javan does with Mommy loving on other little boys, especially babies! (Not good.) But with them, he did perfectly! He didn’t fight with his cousins, he loved them! He loved the babies with me. It was awesome. I couldn’t ask for better Christmas memories. He played well, slept well, everything well. Except for poop. Which he didn’t do the entire time we were gone despite laxatives.

He loved his time with his cousins and aunts and uncles! He even attended the Christmas Eve service at church, which I had severe reservations about, and he did pretty spectacular. He was so enamored with seeing his aunt and uncle sing and play music on the stage that he didn’t even remember to be bothered by the intense light show or the super loud bass guitar inspired by Trans-Siberian Orchastra. He just slipped on his sound blocking headphones and stared ahead with delight. He did get uncomfortable and bored sometime during the sermon. His Pops was so wonderful to take him out of the service for us. They watched the rest of the service from the balcony and he did fine. Later on, he and Uncle Miah even performed their own living room rendition of a song Javan had heard them sing on stage. Javan played his new toy guitar alongside his uncle’s and sang loudly and confidently. So, so sweet.

While there, we also were blessed to have a short visit with my brother and sis-in-law, who happened to be staying with some of her family nearby. They recently found that they will be blessed with their first child in August! Despite several attempts to explain pregnancy to Javan, his first question upon seeing them was still, “Where’s the baby?” Ahhh, he’ll get there in time.

Another huge blessing from above: it snowed! It waited til the morning we were destined to leave, but it snowed and we were not leaving without taking full advantage of it. Javan started with eating the snow. Then graduated to making and throwing snowballs. And finally, the hill. Sledding! He went down several times with adults and alone. What a great way to say goodbye to the perfect Christmas visit in Indiana.

He also recently seems to have hit one of those sporadic and unexpected, but certainly welcome, points in his communication development where he is realizing some things about his awareness that don’t make sense and actually being able to verbalize them. I love when we hit one of these times! They are few and far between, but I learn so very much through them. I’ll give a few examples, and I’m sure the list will continue in the weeks to come. A few days back, when we were in the car, I offered Javan a drink. I turned around in my seat, looked him directly in the eye, held out the drink and said, “Do you want a drink?” Blank stare. His non-responsiveness is intense lately and not a little annoying. So I asked again. No reply.

“Javan. Answer!”

“Oh, I was confused about whether you were asking me or Dad.”

“You couldn’t tell I was speaking to you?”

“No. You didn’t use my name.”

Ok, now that gives me something to work with! I explained to him that if I were looking straight ahead, out the front window, and said, “Would you like a drink?” then neither he nor Daddy would know which of them I was talking to unless I used a name. But, since I was looking directly at him and reaching the drink out to him, he could know I was talking to him without me using his name. So, eye contact means someone is talking to you. Ok, he gets that now. Simple. Done. Why can’t he just explain these things to me before I yell at him for two or three years over it?

Another example. Tonight at dinner Javan was reaching playfully for his Daddy’s hat. Daddy said “no.” Repeatedly. He was getting annoyed and raised his voice, “I said NO!” Javan was offended. He didn’t understand. Japheth explained to me that they had been playing a game with taking the hat earlier and then Javan didn’t know when to stop. Ok, we can work with that. So, we had a little mini-lesson over dinner about how to tell when someone is saying, “No, no!” in a playful manner that means it’s okay to do it anyway (such as taking a hat or tickling) and when someone is saying no in a serious manner and he should stop. We discussed tone of voice and facial expression and then we all practiced taking the hat from each other and knowing when the face and voice changed and we should stop. Javan was able to read our signals appropriately, but was unable to give his own signals appropriately. How could he sound serious when he knew we were play acting? Oh, well, we can pretty much tell when he’s serious.

So, vacation is almost up. Am I ready for school to start day after tomorrow like I had planned to be? Um, no. In my defense, I have had the most terrible case of strep throat ever since our return trip to Texas and I consider washing my hair a priority over housework or school planning. And that’s about all I have energy for. At least it gives me time to write! Happy New Year Everyone!

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1 Comment (+add yours?)

  1. Amy Pruitt
    Jan 02, 2012 @ 02:36:15

    A lot of good news in this post !I am so proud for you all! I do have to say the following blew my mind a little: “He is constipated often not because of any problem in the GI tract, but because he has autism. Because his neuropathways are criss-crossed and he interprets the body’s signal for needing to poop as pain. We know this because if it were a problem in the gut he would present with growth delays and failure to thrive”
    -This quote really blessed me tonight, we too have profound problems with Daelon’s GI tract but I had always attributed it to diet, stress, or flora imbalance; never to nervous system misfire. So thanks for the Ah-ha! moment. lol. Hope your new year continues on this wonderful trajectory 🙂

    Reply

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