No Sugar Coating Today!

It's been a bit since I blogged, but today is the day! I am full of things that I need to get out, or risk my own sanity. Since I last wrote we got our letter from the neuropsychologist, who tested Jake for autism, as well as learning disabilities and memory issues. Diagnosis: PDD-nos. This means Pervasive Developmental Disorder, not otherwise specified. It is one of the classifications of ASD (Autism spectrum disorder)...the easiest way I have ever seen it explained is "atypical autism"...it doesn't mean high-functioning autism as it can have varying degrees of severity. It's not your classic autism, it isn't Aspergers. It is when a person displays some characteristics of autism, not all, but enough to be diagnosed as having autism. This is what we suspected and it's nice to know I'm not crazy. But it is maddening that it has taken multitudes of doctors and nearly 4 years to get someone to see it.

This will not be one of those happy, butterflies and rainbows kind of blogs. I'm over that! I'm gonna call it like I see it. I will explain the cause for today's mood shortly. If you can't handle straight-forward, no nonsense, blatant honesty from me, you should probably stop reading. Because I'm going to tell it like it is in my house. I don't speak for everyone because people with autism are just that, people with autism. Much like I'm not exactly like anyone else, being neurotypical, Jake is not like anyone else, being autistic. One person with autism is one person with autism. They vary like anyone else. So don't take offense if you are living the 'autism lifestyle' and I say something that differs from your view. I am me and I have my opinion and I'm glad other people see it differently because at this point, I wish I did.

First point I'm going to make...mainstream media. If you watch television or are exposed to any sort of mainstream media you have had autism shoved down your throat. The statistic just jumped from 1 in 88 children have some sort of ASD, to 1 in 50. Let me explain this to you. There has not been some rapid increase in cases because of some radical environmental change. They changed their way of counting. Before the last survey, researchers counted 8 year olds. That's it. Now they have broadened their parameters to include all school aged children, from 6 to 17. So of course the numbers changed. How can you expect to have accurate representation with such a small group being counted? So that's the change there. Also, the media isn't doing justice to autism in my opinion. All you hear are feel good stories about savants with autism. "This 6 year old boy with autism can play concert piano from memory"...Or you go directly opposite, claiming that a recent school shooting was done by someone who was on the spectrum, causing fear and paranoia towards the autism community. Let me tell you, those are the exception. Just as not all "Normal" people (And I rarely use the term normal because it implies abnormality in someone with autism. And autism is our normal. I usually go with neurotypical.) kill people, autism does not cause insane outbursts. It also does not mean there will be some beautiful mind with out-of-the-ordinary skills. Jake is not a savant. He cannot draw cityscapes from memory. He is not amazing at math. He can't play various instruments simply by picking them up. For the most part, he is a 6 year old little boy. I think, and this is me, that if people want change, then be truthful. You can't expect governmental change when all you hear are great stories. Tell the truth people. If there are problems with your children, tell them that. If you want change, people need to know that changes need to happen. If we pretend things are okay, why would anyone change them for us? Don't pretend things are super. I don't know why people do that anyway. Does it show weakness? Well, I'm weak. Things aren't super.

I'd like to share a picture with you...

 

This is Jake, post meltdown. This is my face of autism. Post all the cute pictures of kids doing amazingly adorable things that you want. This is our reality. This was after a 30 minute meltdown that began because my husband, whose head you see, tried to put his shoes on. What actually caused the meltdown? We don't know what triggered it. Sometimes you know what causes it. He can be hungry, tired, over-stimulated, upset because of something that happened at school, mad at someone, who knows. But they usually consist of 20 minutes to an hour of crying, screaming, kicking, fighting, flailing, lack of control, he wants to be held, he doesn't want to be touched. He wants you near him, he wants you to go away. He has no control. His body and system are overwhelmed and he needs release. This is the only way he can cope with what's going on inside himself. And we are helpless, as is he. It is the most frustrating, horrific, sad, upsetting display you can witness. Rarely can you calm him down because you can't reason with him once it gets that far. Sometimes, if you are in-tune enough, you can see it coming and head it off, but not often. After he is done, his body is done. He usually cries himself to sleep. He is just spent. That's how this picture came to be. We have had multiple meltdowns because other kids won't play with him at school. That bothers him. Who wouldn't be bothered by that?! I'm bothered by it. Can I fix it? No. I can suggest to him that running around chasing other children is inappropriate. But why is it? Because other people decided it is. He is hurting no one. It gives him sensory input that his body craves. So he does it. Other kids don't get that and I can't make them at this age. This is not ALWAYS our reality, but it is part of it.

 

My current mood stems from my morning with Jake. He did not want to get out of bed, it's Monday, I didn't either. I got him up, gave him his medicine, and that was the end of our normal routine. He wanted cereal. I got him cereal. It was the wrong bowl and the wrong amount and I put it at the wrong seat. Normally, it doesn't matter. This morning it did. I sat out his clothes, which he normally puts on himself. I button his pants and tie his shoes, because he can't do that. Today he refused to do anything. He proceeded to lie face-down on the couch. I tried to dress him. He screamed, kicked, and took his shirt off 3 times and his pants twice. I was calm for a long time. He took his socks off, screamed more at me, and kicked me more. I know it wasn't the clothes. I have already taken the tags out, and I picked out the right socks. He was crying by this point. There is no reasoning with him when he gets to this place. I lost my cool and raised my voice while I was putting his shirt on for the 4th time. He screamed at me more, "YOU AREN'T ALLOWED TO YELL AT ME! I'M CALLING THE COPS AND THEY WILL TAKE YOU TO JAIL BECAUSE THAT'S WHERE YOU BELONG." I was done. I told him to get himself dressed and I would tie his shoes, that was all I was doing. If he felt the need to be late, then that was his choice, I wasn't taking responsibility for that. I was crying. He put a blanket in the floor, wrapped up in it like a burrito and laughed at me. So after about 20 minutes of screaming, melting-down violence toward me, we moved onto laughing at me. I can handle that; it only hurts emotionally. So he finally gets ready and we go to the car. He asks if we are going to see Grammy (my mom) after school and I tell him no, he had a bad morning so we wouldn't be seeing her, we would just come home. Stupid me. I should have ignored his question. Begin meltdown 2. He starts screaming and kicking the seat. He tells me, "Don't expect me to be waiting for you at the gate after school. I will sneak out with another class and I'll walk to Grammy's." I tell him, "You can't do that. It isn't safe. Someone could take you. We have talked about this, there are bad people that do bad things to kids out there." He laughs again, and says, "I'm not worried about it. I'm a ninja."  NOW...you may laugh at this sentiment. But he really does think he is invincible. He has no fear. If someone tried to kidnap him, he really would believe he could fend them off. He has also started trying to roam again. Last week I chased him through the neighborhood 3 times in one evening. So I am actually fearful for him. And I don't know any other way to explain it to him. That is my reality.

 

Then there is the ridiculous amount of hoops we have had to jump through to even get to the right doctor to get the stupid diagnosis. We started at about age 3. He will be 7 in November. We have been to half a dozen doctors. Various therapies. An actual "autism center" which I use loosely because they were a joke, lied to us about our insurance and then sent us a bill for $1900, for doing NOTHING! He sat in a room and played with a college student while she asked him various questions and they ignored everything we told them. So nearly 4 years later we have finally found good doctors that know what they are doing and see what we have been living his entire life. And I see it all the time...people that say, "Oh my kid has autism."...that kid that can go anywhere and have no problems, that gets along with other kids, that sleeps, that eats anything, can wear any clothes, has friends, doesn't fight with you....that kid has autism? And it is shortly followed by, "they get SSI and Medicaid." Yep...there's the epidemic people should be so worried about. People that can work the system, manipulate doctors into a diagnosis, claim their kid has autism then get assistance for it! When people like us have to actively fight for anything! I don't want pity. Screw that. I just want to be able to get my kid the help he needs without having to do a song and dance every single time I ask for anything. That would be nice. But it's cool; I'll do it because that's what you do when you love your child. That child that doesn't hug me except on rare occasions. That kid that won't look me in the eye. That kid that can't make friends and cries about it for hours on end. That kid that can't eat numerous foods because the texture or taste makes him throw up. The one that doesn't sleep, still wears Pull-Ups at, night has night terrors where he screams for Mommy but then screams if I touch him. Can't stand for me to cut his fingernails, has to have every tag taken out of his clothes, wears his socks inside out because seams hurt. The kid that can't be in public places without having "itches" the make him scratch himself uncontrollably. The one that gets stuck repeating a phrase, line from a song, making a siren noise for hours at a time. THAT KID! That is my kid. Yep, I love that kid. I hate all the shit that goes with it. I want my kid. I want to be able to take all the other away and just have Jake. But that won't happen.

I wear an autism bracelet. I have my autism tattoo. I love my son. I hate his autism, but I still want to raise awareness, not because I like it but because we live it. You can judge me, I'm fine with that. I've already been through it when I chose to put him on medication so he could at least function in daily life. I'm used to the stares when you see a little boy who looks "Normal" and appears to just be having a fit in Walmart. What you don't see is his severe anxiety with crowds, or the fact that someone was mean to him and didn't play with him earlier in the day, or that the lights hurt him, or someone is being too loud. You see someone who needs a spanking. Well, that's your problem. I have my own set of problems, I don't need your problems too.

 

 Here's the deal...I love Jake with every fiber of my being. But I am scared for him. I am scared for me sometimes. Not because I fear him. I can take anything he can dish out. I fear the world we live in, the stereotypes, what the future holds for him. I fear what the future holds for other kids like him. What if the things I do aren't enough and he isn't prepared for what life throws at him? If I fail then I set him up to fail. And he won't realize it is my failures; he will see that he is failing. And let's just say it...this autism thing sucks. For so long I have been desperate to hear the words, "Your child has autism."  Well, I got em. Did it help? Not thus far. Will it eventually? Probably. We know what direction to go in. Is that an easy direction? For so many reasons, no. You can say that taking away his autism would change the person he is. I don't believe it. He would still be Jake. He would just be Jake that can make friends, go into public places, wear socks correctly, eat whatever he wants, sleep... He'd be Jake, just easier. And that's just not fair. And it isn't fair that he will have to learn at such an early age that life is unfair. That he is different from what society deems normal. That he will have struggles that the vast majority never face. That just stinks. And I know we are lucky. He is healthy by all standards. But you know, that doesn't make it any easier or more fun.

FINALLY! A step in the right direction?

Hello readers! So obviously it has been months since my last entry. Largely things have been the same. Good days, bad days. Little triumphs followed by back -sliding. We had Jake's parent/teacher conference and confirmed that he is behind academically. This is nothing we didn't know already. He only knew a few of his letters, couldn't recognize most of his numbers, knew about 12/54 sight words... So after asking since last year, during preschool, they finally decided it was time to test him for special services. Months later, they schedule our meeting to discuss/create his IEP (Individualized Education Plan). The first meeting didn't go as planned. Neither of us were prepared and I left in a haze with tears in my eyes, feeling like I had accomplished nothing. He qualified for an IEP based on "Other Health Impairment." He met some of the qualifications for an educational autism diagnosis, but apparently it was easier to classify him OHI. Whatever. Not the important part. So I mentioned it to his wonderful teacher and another meeting was scheduled for a week later. This time we were all prepared and my husband was off work and got to attend. We left with a rough draft of an IEP, stating he would get speech services twice a week for a stutter, and 30 minutes a day with the special education teacher, to work on whatever his teacher deems important at the time. He has about 8 goals that will be assessed annually.

During this time we were also waiting to  go see the neuropsychologist. His psychiatrist noticed things that lead him to believe he is on the autism spectrum, like we have been saying for years. We changed his medicine because he was regressing and we weren't willing to let that happen. He had been much happier, less aggressive, more attentive, etc. and was getting back into a funk. So we went to 0.2 mg of Kapvay twice a day, 5 mg of Abilify once a day, and and changed his Focalin XR 10 mg to Vyvanse 20 mg once daily. I think he is still adjusting, it has been a couple weeks now and he still seems a little sleepy during the day. He had been having more sleep disturbances as well, so that could be part of it. But his doctor asked us to please give it a little time to adjust before we called it quits like a lot of people do. So that's what we are doing. He does seem much calmer in the afternoons, which was an issue before. He goes to bed without Melatonin still, another plus. So...anyway. We went to the neuropsychologist upon request of his psychiatrist. Geez, there are a lot of letters in those few words of that previous sentence! Met him and he was super nice; he had Legos so that won him some brownie points with Mr. Jake. Legos are currently one of his preoccupations. Set up a time to go back about a week later for testing. We wanted to check for autism spectrum disorders, an expressive/receptive language disorder and his memory skills. That was a really long day! He met first for testing, then we  had an appointment with his psychiatrist  and ended the day with a visit to a new child psychologist to address some skills he is lacking. While on that subject I will explain one of those areas of deficit.

Jake is lacking in the social area considerably. He wants to play with other kids, but doesn't understand the 'how to' aspect. We recently made a trip to McDonald's and he wanted to sit in the play place. Normally he would have his little brother with him to play, but on this day he was with a family member, so the only available kids were strangers. He still wanted to play with them. Logic says: You go up, introduce yourself and ask if you can play...or at least you just join them and start playing; kids are usually okay with that. However, Jake doesn't get that. He followed them around at a distance far enough to be "safe" but close enough that he felt he was participating. He never spoke to them. Never played with them. Just followed with an awkward "smile" on his face. He almost looked pained. Well, this lasted about 10 minutes and he could tell something wasn't right and abandoned that tactic. He decided instead to sit inside the giant tree and growl at the other children as they went past him to get to the slide. After 5 minutes we couldn't take it and asked him if was okay to leave and he quickly got his shoes and we left. If he had been having fun he wouldn't have wanted to leave. This isn't an isolated incident. He rarely tells me anything about his school day. With some prying I can usually figure out what he had for lunch, if he ate breakfast, and if he or anyone else got into trouble. That's it. One day he came home and was obviously upset. I'm pretty sure we had a meltdown before we left the parking lot of the school. Screaming, crying, throwing of his shoe for no apparent reason. We got home and I begged him to tell me what was wrong and he blurts out, amidst tears, "NOBODY WILL PLAY WITH ME AT RECESS!" So that was the cause of the meltdown that day. From what he says I picture his recess going something like this: He finds a random little girl or two, because he and little boys seem to have more struggles playing, and he chases them. All recess long....he runs and chases them. He said sometimes he tries to get them to chase him but they don't. I have suggested the swings. Nope. Slide? Nope. Maybe a ball? No thanks. Just running after random little girls. He would rather be around adults. If you bring up the right subject (one that he finds interesting) he will talk to you non-stop until you change the subject to something not Jake-approved. His teacher has mentioned that he will follow her around, all the while she is trying to convince him to return to his seat, and let her know of things that are awry. Heaven forbid there is a change in routine, or something is out of place, or someone isn't doing what he thinks they are supposed to be. If these things happen, he will follow her around telling her what is wrong and that it needs to be righted. Anyway...back to the point....

Today we had an appointment to meet and get the results of his testing...51 miles away...during winter storm Q. Yeah. Super. Luckily his doctor called and said he didn't want us driving in the weather, and we could just have a phone conference instead. I was going to walk 51 miles in the sleet to get there because we have been waiting 3 weeks for these results. We have been desperate for someone to validate our suspicions, but no one would. We went to a respected center for autism and were told just ADHD. You cannot convince me that the things he does are 'just ADHD'. Not true. So let's just keep adding letters after his name. Jake ADHD, ODD, SPD, mood disorder. Or we could do like Mommy says and give him the right diagnosis of autism spectrum disorder, which would, in effect, encompass everything he does. But no, no one would do that. Until his psychiatrist. He just kept saying, "I just don't think I am wrong. I fully believe that he on the spectrum." So why doesn't his opinion count? I asked. It does, but it is a lot less disputable if you have testing to back it up. Hence our trip to the neuropsychologist. He could give us that. So he calls today. Jake's memory skills are fine. It takes him some time to recall information sometimes but it is average to 'better than average.' They also did testing regarding his attention. His results were 'atypical'. Apparently it was on a computer and you were NOT supposed to click the X. He clicked lots of those. So he said his attention was an issue. Okay, yeah, I get that. Then he says, "Regarding the autism testing...." and I think I stopped breathing... "I do believe that he has an autism spectrum condition. More towards the mild end of the spectrum than the severe." He then tells me he understands that is difficult to hear and I replied, "No, we are good with that."  I would like to clarify. We were not wishing for this. It was just something we knew to be true. But when people tell you constantly that you are wrong, you start to question yourself. Plus we have lived with his mannerisms for 6 years now. So you start to wonder, "Maybe this is normal? Maybe we are being nit-picky. Maybe they are right and we are wrong?" But then you go somewhere else and you fill out another evaluation and you are like, "Yep, these things he does are not typical behavior." So I explain that we have thought this since he was 3 years old, and no one would validate us and we were so desperately searching for someone to give us that validation. He agreed that it is frustrating for parents to see things that no one else gets a chance to see, and then those things be dismissed because the doctors/teachers/professionals didn't witness them personally. You have no idea how true that one is. He also said that once you get enough pairs of eyes on a child, they will eventually see things that point them in the right direction. And once they start seeing the same things, you can't dispute them.

So now we have a vague idea of his diagnosis. He is going to write his final report, complete with diagnosis and recommendations and mail it to us. We can then read his findings in depth and share them with his school. I'm not an autism expert. I have read countless articles and sources regarding it, but I still know nothing. I don't know if autism spectrum disorder, toward the mild end is a diagnosis. Or if there is a specific classification within that. When I am filling out forms that ask for his conditions, what do I put? Do I just put autism? I didn't think to ask that when I had him on the phone. So we are getting somewhere, I think. We just aren't completely there yet. I don't think we will ever 'get there' in all actuality. Where is "there"? I'm not one of those people that believe you can cure autism. But I do think you can work with it. We have just been searching for someone to see what we do and lead us in the right direction to help Jake. So maybe we are headed in the right direction. I hope....