Sunday, October 19, 2008

"How to Whip the Autism out of Your Bratty Kid"

I make it a point not to respond directly to famous people in the media who try to talk about autism and seem to constantly fail miserably.. whether it be a politician or some celebrity. It really doesn't affect me much more than it does when one of my friends brushes off my concerns about Jake and says "Oh, he'll feel better once they get him on the right medication." or "Yeah, I'm sure its hard hearing that your child has 'mild' autism." It does upset me that those people have a platform and that their voices are louder than mine.

Before Jake was born I was really one of the nay-sayers of autism. I felt like kids around me were dropping like flies into that pigeonhole and being diagnosed. I was one of those people who would look at a 5 year old who's parents had told me he was autistic and say "I don't see anything wrong with him." I'm just as guilty as the people who I constantly bitch about. I was insensitive, but I THINK that I kept it inside of my head a little more. At least I hope so.

I'll give a direct example. A mother that belonged to one of my various groups told me that her then pre-teenager was autistic whom I had never met. She also had a 5 year old that attended many of our various group meetings and who wore a location device because he was prone to wandering. Having personal history with the mom, I had reason to believe that she was kinda nuts anyway, and watched her from a distance and also observed her youngest and felt like he didn't act much differently from any other children that age. You have to realize that I was also dealing with Jake's lack of motor skills at the same time, so seeing any child walking around and talking made me feel like they must be OK. In hindsight, I remember a party I had where this particular mom and her family were invited to my house to do some mural painting with the kids. She brought the "supposedly autistic" teenager and her then 6 year old little boy. The teen seemed "just fine" to me, although he was obnoxious and hyperactive like any other early teen. Again, in hindsight, there were a lot of things going on with that boy, but I chose to ignore that and opt for the easier answer and assume that she was just still a nut, and probably a bad parent, based on my knowledge of her past behavior (gotta love small towns).

But one thing that my mind brings to the surface and makes me repent all of those thoughts every time I see Jake smack himself in the face when faced with a decision is this. Her "normal acting though maybe a little nerdy" six year old came to me and asked for more paint. I was currently mixing and held up two bottles and said "yellow or blue?" Her 6 year old stared at me as if I'd asked him to stab himself in the eye, briefly smacked both of his hands across his cheeks, grabbed one of the bottles, and ran away. "Ok.. that was a little odd." I thought.

Now I see this exact same behavior in Jake every single day. When presented with a "would you like THIS or THIS?" question.. he becomes distraught, and will usually slap his own face or cover his eyes or ears. So there, I said it, I was one of those judgemental people. I didn't know, so I try not to blame others so much for their ignorance.

Another way that people tend to try to make me feel better, aside from telling me that Jake is fine, that "the doctors just like to diagnose everything these days" is to offer me a miracle cure. Again, from what I can tell (as my anger at the world dies down.. don't worry, it will soon rear its ugly head again, I am sure), most people are really really trying to do me a favor and trying to help. I can just give Jake a special diet or read some celebrity's book and he'll be cured. "My friend/someone I read about/my sister in law gave their child chelation therapy/stem cells/a special diet and now their kid has almost no signs of autism."

Despite my fear of vaccinations and additives in food and other possible environmental hazards that could be making our children sick, I am beginning to accept the fact that Jake has been different from other babies since very very early in his life, possibly since birth or very close to it. I am also beginning to accept that fact that there is no cure for being Jake. He will be the awesome person that he is, not neccesarily despite what I do.. because I need to work hard to help him NOW, but that he is who he is, regardless, and he will always be affected by his ASD. I think that he will always have hurdles to jump and mountains to climb, and that if I spend too much time looking for a "cure" then I will be wasting time. I just want to help him right now. My job is to find the right path and to take it.

P.S. The irreverent title is in reference to some of the latest media crap. I will honestly say that if a few spankings would have "cured" Jake of his autism.. then we would probably just suck it up and spank him. Thats all I have to say about that.

Thursday, October 16, 2008

Occupational Therapy Day 8

On Thursdays Jake is picked up by the bus at 7:15 (This morning he didn't wake us up until 6:57 and the bus came at 7:07... nothing like a Chinese fire drill to set the mood for the day). He is dropped off by the bus at 11:00 and we have 30 minutes to get him fed lunch and to be in the car to leave for OT.

Today's session went really well. Cindy was able to engage Jake in play for quite some time. He is leaving her less often and coming back to engage her after a few seconds break. Its really neat to see how they are growing together. At the end of the session I expressed my concerns to Cindy about having all of these tests run. I told her that I honestly didn't really like Dr. Causo or his recommendations. I feel like the tests are unneccesary and on top of that that they are a financial strain. We have only managed to get one of the tests done at all, and it would probably take a year to get them all finished. I really don't want to go back to him, and I feel just like Dr. Michaels seemed to when he said "Gosh, I was really hoping just to get a diagnosis." She suggested (and Dr. Michaels had also mentioned) that I contact Floortime Atlanta and have Jake see Dr. Deborah Dunbar who is a developmental psychologist who specializes with children with ASD. She is also one of the people who Cindy is working closely with to be certified. I talked to Steve about it and I think we are going to switch more to that path. I am not opposed to having the tests run on Jake, but I feel like I've been put into a position where, since the tests have been suggested we need to do them "just in case" and that not doing them is careless. However everything inside of me says that they are just unneccessary. Cindy assured me that, should Jake need any tests run in the future, or if we change our mind, that Dr. Michaels can order those tests. The financial part of it doesn't so much play a role, as we will find a way to afford anything Jake needs, however I would just like to find a path and stick to it... instead of floundering around doing some of this and some of that. I will contact Dr. Dunbar ASAP.

Aside from discussing that, Cindy again assured me that Jake will be high-functioning, but that the time to work with him to give him the tools to be so is right now. I again expressed my frustration with the term "high functioning." "What does that mean?! that he'll be able to dress himself, use the potty and tie his shoes, or that he will be able to be independent and happy and have relationships?" Her answer was "I think he has the potential to not only function highly in society, but to be extraordinary." Thats nice to hear, and I try to believe it.

In other news....
Jake still absolutely adores school. He is talking a lot mnore, and even though a lot of it is still echolalia, he is learning to occasionally answer a question correctly. He still tries "YES!" no matter what the question is, but he learning appropriate responses like asking "are you OK?" when someone else is hurt, or "I'm sorry, baby brother" when prompted, and he seems to at least act genuinely sorry and use correct inflection, instead of just yelling out the words. Jake came home today and wanted to play marching band (banging two pot lids together while Dad tried to talk on the phone). I "helped" the noise level by getting a harmonica, handing Manny a toy tambourine to shake while he rode on my back, and we had a full fledged marching band. I've been trying to get Jake to play this game since he could walk, but somehow they got him to do it at school. I was thrilled.

Today his notebook from school came back with this note:
"Great day! The Chick-fil-a cow came today. Jake didn't like the cow too much. He calmly told us "No, cow." "Bye Bye cow." He went back to the room and played on the computer and was happier. (I don't blame him, it was a BIG cow.)"

I am feeling a bit better this week and not so down. A whole week of being sick, complete with 2 days of fever so bad that Steve had to take off work because I couldn't lift the baby really took its toll on me. I really need all of my wits and health about me in order to function like I need to. I am glad to be well again. Here's to a sickness-free school year.

Sunday, October 12, 2008

Another Update

I've thought a few times about deleting my previous post, but just decided to leave it. It seems like my family and I are feeling a bit overwhelmed right now and traveling through a rough spot. Steve is having a hard time dealing, and I feel like I need to keep everyone happy at once, and that I'm failing miserably.

Jake is actually doing really well. He's doing good in school and seems to be really enjoying it. I have yet to see any signs that he's having the least bit of trouble adjusting. The notes from his teachers in his notebook are always positive. His second horse riding lesson went even better than the first. He enjoyed sitting on the horse and being led around a field.

Jake has lately been showing even more sterotyped behavior than he used to. Questions that i was able to answer "no" to on the various autism questionaires are now becoming "yes's." Jake didn't used to repeat questions, but lately he does it a lot. He also recently learned to say "Yes!" and everybody got so excited that now he thinks that this is the answer to every question. I was playing with some easy puzzles with him, putting them together and then asking him questions about the pictures. Our conversation went as follows:

Me: "Jake, what color is the parrot?"
Jake "Jake, what color is the parrot?"
Me: "Jake, what color is it?"
Jake: "Jake, what color is it? YES!"

Also, in the past Jake has lined up objects or stacked blocks, but hasn't really gotten frustrated if they are disturbed. Recently he gets really agitated when things won't line or stack like he wants. He constantly lines things up... searching for MORE cars to line up, or trying to line up everything in the entire room. If blocks fall he gets very upset, and an even more frustrating trick that he plays on himself is trying to stand books up on their ends. Some thick books will stand up, but he even tries to stand the thin ones on end. He gets very very upset when they won't stand up.

The verbal stimming is about to drive us to distraction. Jake has a few.. the "whooohoohoo" sound, the hissing and clicking, and he can imitate the blinker clicks on the car with amazing precision. The last one is about to make his father and I lose our minds. He does it all day, and LOUD! Its amazing the amount of carry he can get with that 'bump click' sound. We've just started telling him to cut it out. Its unbearable. I think sometimes that these things in themselves might not be as annoying, if it weren't for the fact that its a constant reminder that something is very wrong in that little noggin of his.

The one thing that the therapists, the literature, and pretty much everything else I come across about autism therapy, is that Jake needs to be engaged for most of the day in order for him to develop and grow. I am constantly reminded of this fact. When we are at home it takes only minutes for Jake to slip into stimming behavior if left alone. In the past I feel like I've taken advantage of this fact in order to get things done that I needed to do. Now I feel guilty if I spend more than a second doing anything but engaging him. When he stims he is loud: clicking, hissing and popping his tongue, and if I ever slip off into another room I can hear him. All I have to do is say "Jake, lets play a game" or "Jake lets go outside" or "Lets go for a car ride." to bring him out of it, but it can just be so exhausting. But if I don't engage him, I feel like I'm just letting his brain rot and letting him slip further away. I feel like I've wasted so much time already, and that I've done him a great disservice by taking advantage of the fact that he "always liked playing by himself." I will never get rid of the feeling that so much should have been done so much sooner. I feel like I have to make up for lost time by doing as much as I can now. Part of the reason that we are always going out is that I have an easier time working with Jake when we are at the park or the aquarium or just about anywhere. It comes natural then. At home its forced and he is so difficult to engage. It usually ends in frustation on both of our parts. I am grateful for the couple of hours that he goes to school. At least I can hope that he's learning there.

Meanwhile, Steve is voicing frustation that we have absolutely no family support. I correct him and say that my father is always available to talk about it and give support. Otherwise, we're pretty much screwed in this department. Steve's mother and father raised Steve's brother, who was born profoundly deaf and who Steve is beginning to believe has some social delays as well (Steve remembers VERY vividly that his brother exhibited echolalia). He feels like they SHOULD be a source of support, but they are quite happy to just not talk about it. The rest of my family is the same, prefering to avoid the subject or just to avoid us altogether. He says he feels alone. I know how that feels, especially since it took me two years to convince anyone, including my husband, that Jake has issues.

Sometimes I think we just need a break with each other. Steve and I have been out to dinner without the kids once since Manny was born... we left for a grand total of two hours.

I guess I'm using my blog as a bit of a whine-fest and vent vehicle lately, but sometimes it helps me to go back and read.

Wednesday, October 8, 2008


Its been a week since I updated. Part of the time I was distracted by fun, and the rest of the time I've been distracted by illness. Friday I had planned to have Jake's blood tests done, however I was given the run-around. After securing Mamaw as a babysitter for Manny I was still unable to get Jake's blood tests done due to some sort of confusion that I don't understand. I'm getting used to wasting time waiting for doctors to communicate with each other though.

Friday night we set off to the Three Sisters bluegrass festival and had such a wonderful time that we had to repeat the performance on Saturday.

Oh well.. i'm trying to write about all the cool stuff we did this weekend, the great therapy appointment, and Jake's apparant great time getting his blood draw (finally) and cracking up all the nurses by saying and signing "Jake is crying.. Jake is SAD." I wasn't there, I was sick in bed with some sort of incapacitating bullshit flu. I am trying to keep my blog positive like I said I would, while in reality we have dealt with two days of tantrums brought on by nothing more than Jake's inablility to communicate or.. as his mother, I am more apt to say, my inability to understand my son. Sometimes I find myself terrified of my son. Walking on eggshells so that I don't set him in the wrong direction. I know that all parents deal with this at different ages, but here it became a lifestyle when Jake was but a few months old.

I feel like I live in some sort of paradox. Where people who don't really know Jake, like my family and peers say "oh, once he gets the therapy/medication/whatever that he needs he will be fine" and the people who really know Jake.. like me, Steve, and his therapists and teachers say "once he gets what he needs he's sure to be 'high functioning'".

Its hard to sort that all out. The people in denial say he'll "be fine" while the people who see kids like him every day call it "high functioning". Does that mean he's going to "be fine"... or that he's going to function at a high level for a "retarded kid." Please don't think that I'm being insensitive (the 3 readers that actually view this blog), because I type this out while crying my eyes out late at night.. because I can't sleep anymore). I'm tired of pussyfooting around the reality.

Meanwhile, I'm just trying to hold myself, my kids, and my family together. No small feat when there are great crisis going on in the great big bad world outside. I wonder if we'll all have a job in a few years, and I can beans while I wonder. I wonder when we'll find a reliable babysitter or nanny who can take over some of the time that I NEED to spend with Jake while I make money for the family, or one who can at least be interested in becoming knowledgeable about Jakes issues and can help us for a few hours on weeknights when we really need it. And if I find that person, can I afford them!

Luckily, the stress of the holidays has not gotten to me yet, well, not too much anyway. This year we will be out of town for the majority of the celebrations, and for that I am truly thankful. The most heartwrenching part will lie in bowing out of celebrations and the great-big gift exchanges that are so important to my family. We just have so much more to think about this year.

Its been a long week.. please excuse the tirade. I'm having a moment.

Thursday, October 2, 2008

Occupational therapy day 7

Today we met Cindy at Brookwood Park. Jake was very happy to see Cindy. He took both of our hands and led us to the playground. She has a way of interacting with him and engaging him that I am learning to model. She seems to say that she is still feeling him out, but she is getting good at it. She said before that she wants to be a special person in his life so that when she needs to challenge him and do some "risky stuff" with him, that he will trust her. I think that she is well on her way. Jake doesn't give many people names. As far as I know he only names: Mommy, Daddy, Brother(Manny, or baby), Mamaw, Papaw, Grandy, Courtney (the babysitter), and Bridgett. Today he said "Hi, Cindy" and at the end of the session "Bye Bye Cindy." She's managed to become special to him in less than a dozen meetings. I won't mention the fact that he didn't say "mommy" until he was over two years old.

Cindy is very supportive and is becoming a special person to me too. She doesn't just work with Jake (although that is her main objective, and she sometimes says "I'll talk to you later, let me do this with Jake" in not so many words) she also asks me about my husband and family and how they have dealt with Jake's issues. I am honest with her, and she makes me feel good about my parenting choices. When Steve and I were talking about dropping speech therapy in favor of letting him get speech therapy at school, I made it extra clear that I wouldn't drop OT with Cindy. "I'll groom extra dogs or sew extra packs, but we will keep Cindy. She is my ally." I can't fathom that someone can manage to be so "non-self-absorbed" (I couldn't find a good antonym) and take such an interest in the children that she serves. Of course, some might just call it "being professional" but I think that its more than that.

Tomorrow we go to the diagnostics center for a blood draw. I have put it off all week. Thankfully Mamaw will be coming over to watch Manny, so I don't have one baby screaming while another is held down for a blood test. Maybe Jake will surprise me and not freak out. We shall see. Looking forward to the end of this week!

Wednesday, October 1, 2008

Riding Lessons

I suppose that my ultimate goal these days is to completely exhaust both of my sons. This morning Jake asked if we could go "ride car city" so hey, my internet connection was dead, so why not. We headed to the aquarium, then to a really neat toy store where both boys got new toys. Jake got a fort building kit and Manny got a ride-along toy. Then we went to the organic grocery for lunch and home.

Only a couple of hours after getting home it was time for Jake's horse riding lessons. He did really well, although he only wants to stay on the horse when it is moving (who wouldn't, the alternative is hitting the ground, I guess). He was a bit whiney, but she said he did a lot better than a lot of kids his age who sometimes cry their entire first lesson. We will try different approaches, and more variety than just walking in circles. His favorite part was giving Red cookies. Oh, and the helmet, he couldn't get enough of the helmet. I'm hoping its something he enjoys for a long time...the riding lessons, not the helmet.

When we were done he politely handed his helmet back to Crystal and said "Thank you" in words and sign.

He's asleep in his room now, worn out from a long day.

Occupational THerapy Day 6

Cindy took a "Watch Wait Wonder" approach to learning about Jake on Tuesday. She let him lead a lot and then trying to figure out why he does what he does. For instance, turn-taking games are too overwhelming for Jake, even simple ones. For instance, he was kick kick kicking his feet in the air for fun, so Cindy laid beside him and kick kick kicked her legs too. He would go, then she would go. He liked the game, but it was just too much for him. After 3 or 4 turns he had to escape and run do something else. This pattern continued with other things.

I am learning a lot about Jake and always interested in what insight Cindy will have next. Thursday we are going to meet at the park and she wants to see how I interact with Jake on a daily basis. It should be fun.