I'm Doing the Best I Know How - Aidan's story

I posted this on my Facebook page back a couple years ago, but I don't think I ever posted it here. Here's the story of Aidan's autism:

In August 2008, my son Aidan was diagnosed with a disability known as autism. Officially he has what is called PDD-NOS or Pervasive Developmental Disorder Not Otherwise Specified, which means he has atypical autism. He hadn't even turned five years old yet. In some ways it was a relief - it was good to finally know why my beautiful, smart, smiley, talkative, almost potty trained little boy had suddenly stopped talking, potty training, and began having regular meltdowns with little or no warning or reason. I faced a lot of that horror by myself - my husband at the time was away with the military, and then we moved to Texas and he was busy otherwise. I had no idea what I had lost my baby to - they said he had good hearing so it wasn't that, but no good reason could be given for his regression. Finally, a year after leaving my husband and moving back to Alabama, Aidan's pediatrician referred him to the TRIAD clinic at Vanderbilt University, which specializes in diagnosing, researching, and assisting with helping to recover from autism. Dr. Warren spent 4 hours with Aidan, playing with him and talking to him, all part of a battery of tests that helped him finally determine what we had feared - Aidan was autistic.

When someone gives you news like that, even when you have your family there with you, it's completely overwhelming. Like getting caught in an undertow. And there is so much information they give you about what autism is and why it might have happened and how you can maybe reverse some of the symptoms. You start trying to get in touch with all these people to get help for your child, and in so many cases they don't help or can't help or won't help. I struggled with the schools and got turned down by the Social Security Administration and wondered why speech therapy and occupational therapy and behavioral therapy weren't covered by insurance. I began investigating whether I should start refusing to allow my son to be vaccinated, whether I should change his diet to one without gluten or casein or sugar or strawberries or blueberries...

And no matter how much you explain to people that your child is autistic, and what that means, they really don't seem to get it. When he has a meltdown in the middle of the floor because you told him no, people just assume you have spoiled your child and are letting him manipulate you. What they don't realize is that the reason your child is so out of control is because on top of being in an environment where every sound, every light, every touch is more than he can handle, you've just changed something on him without properly setting an expectation and his brain, the way it works (or doesn't work) can't handle it. He literally can't maintain control of his own behavior. And it isn't always easy to know what will trigger him, because even though he's five years old, he doesn't talk well enough to tell me what's going through his little head or that he's feeling completely overwhelmed.

When you choose to quit your job to stay home with your little boy because you feel that's the best way for him to continue making progress, it's a bit of a slap in the face when people look askance at your choice. I'm doing what I know is best for my son. I can't afford to pay a professional to give him speech and behavioral therapy, and once a week or an hour every other night before bedtime won't do him a bit of good. I don't know what I'm doing of course, so I have to research and learn to be a speech therapist and teach my child how to read faces and non-verbal social cues. I have no idea if changing what he eats will help him, or if it's a good idea to possibly make him vulnerable to deadly diseases in order to prevent him any further regression from a vaccination.

It's SOOO frustrating to try to help your child when even DOCTORS haven't a clue what causes autism, what triggers it, how to treat it or whether a child can ever totally recover from it. I'm trying to be brave and take it one day at a time. And I literally have people who will tell me that I am a bad mother because my child sometimes talks back or throws fits or doesn't eat the healthiest food. They don't understand that an autistic child doesn't always understand that when he echoes a phrase he's heard another child use or when he uses the tone he's heard an adult take with another adult that it is socially unacceptable. They don't get that I don't LET my child throw fits, I just can't always stop one once it's in motion. They don't see that there are days when if I want my child to eat anything, I let him eat whatever he's willing to put into his body and hope that I can balance it out with something else later in the day or week.

And yes, sometimes I need a break from Aidan. And yes, sometimes I am angry that my child is autistic. And yes, some days I question my decision to have a child (which wasn't planned, but every woman has alternatives when she finds herself pregnant). But know this and NEVER question it: I love my little boy with ALL my heart. I would not give him away. He is an amazing little boy who has worked VERY hard to recover from his disability and has made such great progress. He is so smart and wants so bad to make those around him happy. He has bad days, but he also has very good days which more and more often outnumber the bad days.

Thanks to all of you who have supported me as I raise Aidan and we defeat autism together. Especially Jeremy and my mom who have provided so much help and love that I am forever in their debt.

For more information about autism go to www.autism-society.org

I selected this post to be featured on my blog’s page at Autism Blogs.

Meltdowns 101

A lot of people outside the autism community seem to be confused or misinformed or uninformed about meltdowns in autistic children (and adults for that matter). I know that when Aidan has a meltdown, I make myself stop and say “Okay, is this a meltdown or just a tantrum?” It's usually pretty easy to tell the difference. Sometimes a meltdown will start as a tantrum but devolve into a meltdown, usually because Aidan's communication skills aren't enough and he gets frustrated, or because whatever caused the tantrum was just a trigger for a meltdown (like the straw that broke the camel's back – more about this later). A meltdown can happen for any number of reasons, and it's often difficult to tell what that reason is – I try to go back after an unexpected meltdown (it's not possible to do so DURING) and figure out what triggered it. If and when possible I'll try to defuse the situation before the meltdown happens, but this isn't always possible. Just like the bombs on television always have digital clocks on them, all autistic kids have bright, easy to see, obvious warning signs, right? Wrong. Sometimes I can see it coming, but unfortunately it's usually too late by the time I do.

What does a meltdown look like?

For Aidan, a meltdown may start with a very aggravated look on his face, widened eyes, clenched teeth, and balled up fists. He'll often growl at me or grunt, and usually at this point is beyond speaking to me, especially not to tell me what's wrong. This then progresses beyond aggression into violence – at this point if I look at his eyes, it's almost like Aidan's not in there at all, he's been taken over by this crazy little rabid animal for the time being. He begins screaming at me and then attacks me. I can try to walk away or place him in his room to do his thing by himself, but inevitably Aidan will pursue me. He will punch me, scratch or claw me, kick me, throw whatever is available at me, headbutt me, and attempt to bite me. His whole body is completely tensed up, his back frequently arched. He's chipped my teeth, broken Jeremy's glasses, damaged his own toys, thrown furniture, and always leaves claw marks and bruises all over me. It can last anywhere from 5 minutes up to an hour (we've never seen one longer than that, thank goodness, although he has had multiple meltdowns in one day). A meltdown doesn't stop as suddenly as it starts. Eventually Aidan slowly calms down, stops hitting me or trying to hurt me, moves from screaming and growling into crying and sobbing, and his body relaxes. He'll hide his eyes at this point, a lot of times he'll cover his ears, and sometimes he'll let me rub his back but usually he doesn't want anyone to touch him. If I try to talk to him about it, it's going to either make him cry harder or ramp the meltdown back up. He's usually very very tired after a meltdown and doesn't talk much at all.

What causes a meltdown?

Often a meltdown seems like a mystery. There are any number of triggers for a meltdown, and what may seem to be the cause of a meltdown this time, might not so much as phase Aidan next time. Or something that never bothered Aidan before suddenly sets him off unexpectedly. This is a pretty good sign that what set him off was a trigger but not the cause. Think of it like the old metaphor of the straw that broke the camel's back; a combination of sensory overload, physical discomfort, frustrations, disappointments, or surprises comes together to confuse Aidan's brain and he doesn't have the vocabulary or self-control to handle it calmly or at least ask for help to fix the situation. Sensory overload for Aidan is usually sound related, although it can be lights or any number of other sensory input – think of it kind of like how a strobe light can cause a seizure. Physical discomfort we've discovered after the fact has been from toothaches, tummy aches, sore throats, and even from being given milk at school (his tummy is very sensitive to milk products). Frustrations could be caused by a game not working for him or a friend not doing what he wanted or expected. Also, Aidan has a very strong sense of “justice” which isn't always logical, but if you punish him for something that he feels was not wrong or that he wasn't told there was a rule against, he will go into a tail spin.

Can't this just be “disciplined” out of him?

If Aidan is just throwing a tantrum, or if he's winding up toward a meltdown but still has some control over his behavior, then yes, discipline or even distractions can help the situation. But if Aidan loses control over and unmet need or discomfort, and I punish him instead of figuring out what his problem is, then I'm only going to make Aidan even more out of control. Basically I'm punishing him for trying to communicate that something is wrong in the only way he knows how at the moment. Some days his verbal skills are worse than others. Especially if Aidan is fighting off being sick, his ability to tell me something wrong can be diminished by various factors, and if I try to punish him into acting the way I want him to, I'm just going to make things worse.

So what do I do now that I know?

For a long time I had no idea whether Aidan was having a tantrum or a meltdown. I would try to punish him and only make things worse. Without the experience I have now with Aidan, I wouldn't know what to do in the event of a meltdown. Now, if I judge that Aidan isn't throwing a tantrum but has completely left the building when it comes to his ability to control his behaviors, then my only option is to make sure he's in a safe place (out of reach of things that can get broken or could hurt him), and try to restrain him enough to keep him from hurting himself or me. It's exhausting for everyone involved, and god forbid it happens in public. I think the hardest thing to explain to people without experience in the world of autism, is that aggression and meltdowns and the behaviors associated with them, are not signs of a spoiled or bratty child, or of bad parenting – they are simply symptoms of a disorder.

I invite your questions, comments, and suggestions (so long as they are constructive and in the spirit of learning and cooperation).

Visiting the Principal

Today I had to go talk to Dr. Lewis (the principal) is because Aidan punched and hit a little girl, and apparently this is the 3rd time he's done it this school year, so for liability reasons, they had to talk to me about it. Aidan won't say a lot about what happened or why, and he had a meltdown from the door of the school until about 5 minutes after we got home. If this doesn't get settled, we'll have to do a new IEP to try to deal with this aggression and occasional violence.

This has been going on (this go round) for about 5 days now. I'm not entirely sure when it started (I'd have to go back through my facebook and tweets to determine the first meltdown of this cycle), but I know Sunday he had a major meltdown out of the blue, and then got beat up by a little girl while two little boys looked on and one took pictures.  He's had meltdowns and been very aggressive and easily upset since then.

One thing I noticed today is that the yogurt we got him (he always has Dannon Activia because of past problems with his tummy) was actually Light, which means it has artificial sweeteners in it. I wonder if this has anything to do with the problems he's having. I'll definitely be cutting that out and throwing the rest away.

But the problem with hitting the little girl isn't a recent problem apparently. I'm not sure when it started, but it apparently didn't just start this week, so I don't know what to think about that. They didn't give me a whole lot of information.  Ms. Annie wasn't there to see what happened, Ms. Simmons probably wasn't either since it happened in P.E., and the Coach didn't come to the meeting with Dr. Lewis to tell me what he saw. So we're depending on Aidan to tell us what happens, and he always gets very agitated and frequently melts down when you try to extract information from him about what happened in a situation like this.

I literally have NO IDEA WHAT TO DO in this situation. Back in September-November he had problems like this too, although they weren't manifesting at school, only at home. I wish I had some more resources with what to do. Insurance, even Medicaid, doesn't frequently pay for autism therapy, but I'm going to try to go soon to the mental health center and try to get him an appointment to maybe talk to a counselor or something. Any other suggestions would be greatly appreciated.

Another encounter with Bullies.

Earlier today Aidan had an encounter with Bullies. I wrote about it on Facebook and some on Twitter, so I'll just compile it all here for everyone, and for the general record.

Around 3:30pm -

"OMG WTF! SOME KID DOWN THE STREET JUST BEAT AIDAN UP!!! She punched him several times, and he has an abrasion on his face and ear. He says he doesn't know why, that he didn't hit her or say anything mean to her.

He said she pushed him down and punched him in the face and the head and legs, and pulled his ear. He couldn't tell me what words she said. I'm so upset right now, angry and sad that this could happen to my child. I don't know what to do.

He says that there were three kids - the little girl was the one hitting him and one of the other kids, an older boy, was taking pictures. He said he's never played with them before, but that once they tried to break his scooter."

A couple of people made suggestions:  

"Well I suggest you talk to her parents, prob better after you calm down. If that doesn't get anywhere, contact the police."

"ugh I hate bullies. I'm so sorry! maybe take pictures of the injuries..?"

I responded:

"I don't know where the kids live - and I am sure that if their parents are anything like the other parents in the neighborhood then it will just come down to a case of he said-she said. It's happened before, although never before has a kid punched him."

And then about half an hour later:

"Are you freaking KIDDING ME?! The kids just came back down here and asked if he could come back out and play. I asked them what happened...It didn't match up to Aidan's story at all, except that they were playing with lightsabers. I told them he couldn't play anymore with them.Why would he say she punched him with her hands if they were just "playing at hitting each other with lightsabers"?"

To which I received several responses from friends:

"If the kids are still out there, go ask them where they live. For Aiden's sake, the least you should do is talk with the parents."

"I don't think your child is a liar. I DO think you need to take pics of his injuries & set up time to talk w/ other kids' parents. Aidan doesn't make stuff like this up. Sounds like the 3 kids were tormenting him & if there are pics on their cameras it's proof."

 I said:

"We don't know what house they live in, and the kids are gone now. I wish Jeremy were here, so we could find out. I don't do well in situations like this. I'm not sure all the kids are even related."

"I don't know - they acted like they didn't know what I was talking about when I asked about that. I'm sure they deleted them."

 

 I'm not entirely sure of the whole situation. I don't know the whole story - Aidan told me what he could, and it's entirely possible he was playing rough and left something out, but I still think it was inexcusable for her to punch him and for other kids to take pictures. It's not just Aidan - he gets along fine with Jacob and Jonas and Briley and her brothers, as well as the kids at school. The only problems I've really seen are with the kids today and the next door neighbor kids who are very verbally abusive.  I'm still very upset over it, but Aidan seems to be okay for now. He definitely will not be playing with those children again. 

DIBELS (What the heck is that?!)

DIBELS is an acronym for Dynamic Indicators of Basic Early Literacy Skills. According to their website,

"The Dynamic Indicators of Basic Early Literacy Skills (DIBELS) are a set of procedures and measures for assessing the acquisition of early literacy skills from kindergarten through sixth grade. They are designed to be short (one minute) fluency measures used to regularly monitor the development of early literacy and early reading skills.

DIBELS are comprised of seven measures to function as indicators of phonemic awareness, alphabetic principle, accuracy and fluency with connected text, reading comprehension, and vocabulary. DIBELS were designed for use in identifying children experiencing difficulty in acquisition of basic early literacy skills in order to provide support early and prevent the occurrence of later reading difficulties."

We got Aidan's DIBELs results back today from the testing in January (they also tested in August, and I imagine they'll test again sometime between Spring Break and the end of the year.  If you'll remember (or maybe you don't), last year when they did DIBELs at Creekside it threw Aidan's schedule off so bad he never did recover. This year he seems to have handled it much better.

The first area they scored him on was "Initial Sound Fluency" 

("The examiner presents four pictures to the child, names each picture, and then asks the child to identify (i.e., point to or say) the picture that begins with the sound produced orally by the examiner. For example,"This is sink, cat, gloves, and hat. Which picture begins with /s/?" and the student points to the correct picture. The child is also asked to orally produce the beginning sound for an orally presented word that matches one of the given pictures..."). 

In August he scored above the target goal which was 10-15 correct letter sounds, by identifying approximately 25 initial letter sounds. As of January 14th Aidan did so well he scored above graph bounds!!! That's right! Target goal was to identify 25-35 initial sounds, and he identified 74 (top of the chart was 70).

The next portion of the test was "Phoneme Segmentation Fluency" 

("assesses a student's ability to segment three- and four-phoneme words into their individual phonemes fluently... has been found to be a good predictor of later reading achievement... administered by the examiner orally presenting words of three to four phonemes. It requires the student to produce verbally the individual phonemes for each word. For example, the examiner says "sat," and the student says "/s/ /a/ /t/" to receive three possible points for the word...").

January was the first time he had been tested for this, and the goal was to identify 20-25 correct phonemes. Aidan scored well above this target by identifying 60 phonemes.

The third and last thing they tested him on was "Nonsense Word Fluency" 

 ("The student is presented a... sheet of paper with randomly ordered... nonsense words (e.g., sig, rav, ov) and asked to produce verbally the individual letter sound of each letter or verbally produce, or read, the whole nonsense word. For example, if the stimulus word is "vaj" the student could say /v/ /a/ /j/ or say the word /vaj/ to obtain a total of three letter-sounds correct. The student is allowed 1 minute to produce as many letter-sounds as he/she can, and the final score is the number of letter-sounds produced correctly in one minute.... students should receive a higher score if they are phonologically recoding the word, as they will be more efficiently producing the letter sounds, and receive a lower score if they are providing letter sounds in isolation. The intent of this measure is that students are able to read unfamiliar words as whole words, not just name letter sounds as fast as they can.") 

This had also not been tested before January, and the goal was to produce 20 correct letter sounds. Aidan achieved just above the targeted goal by correctly producing 33 letter sounds.

I'm so excited that Aidan has done so well on the DIBELS test this year. Obviously his reading skills have vastly improved. Ms. Simmons says he does very well reading in her class, and he seems much more interested in books and reading at home now that he's got a better understanding of how words work.  I can't wait to see him continue to learn and improve.

New Year, New Rules

So the year started out rocky.  We've been in and out of school thanks to snow and sickness. Of course, any change in routine really messes Aidan up, so we've been struggling somewhat to have good days. Overall though, it's been a really good year. We got back Aidan's annual goal progress report which allows us to see how well his IEP is working for him and what kind of progress he's made toward his goals this year (hence the name...). We had two major goals.

• Goal: By the end of the 2010-2011 school year, Aidan will exhibit appropriate social skills by controlling his excitement, using an inside voice, asking for a break, and staying seated 8 out of 10 times.
• As of 10/08/2010: Some progress had been made, and mastery was anticipated: "He loves being in Kindergarten! He has been asking for breaks and controlling his excitement. He has his days but the General Ed teacher reports that he has done great!"
• As of 12/17/2010: Some progress has been made, and mastery was anticipated: "Aidan is a great typical Kindergarten boy. He is using an indoor voice, asking for breaks, and staying seated. We are working on him listening and staying on task. He loves to make friends. We are working on the dos and don'ts of how to play with friends and not get in trouble.
• Goal: By the end of the 2010-2011 school year, Aidan will improve his basic living skills by demonstrating the ability to fasten and unfasten small button closings on his clothes and tie his shoes and write his numbers 1-10 in 3 out of 4 trials.
• As of 10/08/2010: Some progress had been made, and mastery was anticipated. "He is able to fasten his buttons and clothing. We are working on tying a knot on a shoe. He is doing great in writing his numbers but has to be reminded to slow down and write smaller."
• As of 12/17/2010: Some progress has been made, mastery is anticipated. "Aidan is working on tying his shoes, he is able to zip up his own jacket. He is able to write his numbers when he is on task and focused. If he is not focused, staff will make him redo his writing and he does very well the 2nd time."

So all in all a very good report. We're excited to see that he's doing so well and enjoying his second go at kindergarten.

Today we had a meeting with Ms. Simmons (the kindergarten teacher) and Ms. Annie (the autism unit teacher) to discuss preparing Aidan for first grade next year. Since he started at Johnson he's been using a system that required him to earn 4 baseballs in order to earn a reward at the end of the day (a toy, computer time, time in the sensory room, etc). He is also required to earn all of his baseballs to get to play his DS when he gets home. Basically what this means is that as he progresses through his day, he'll earn a token at certain intervals if he's met the behavioral expectations. If he hasn't done well (i.e. pushing, running in the hall, refusing to do his work) then he doesn't get the baseball. Ms. Simmons has decided that it is time to phase out the baseballs. She has her own behavioral system in her room that involves check marks for bad behavior and consequences for those checks such as time outs or losing the opportunity to participate in the sharing portion of show-and-tell on Fridays. Her biggest concern about the token system is that Aidan obsesses over how many baseballs he's getting. We're hoping that if we get rid of this system it will free up his concentration for other things. She also asked that we not make a big deal at home out of behavioral problems at school since he gets punished for them at school.

Secondly, we discussed the end of sending him back to the autism unit for the last 15-20 minutes of every day. He used to go down to Ms. Annie's room for the last 45 minutes to an hour, but that was distressing him for a couple of different reasons; he really wanted to stay with his group, and he felt like the autism unit was the "baby room". Because of this they switched the majority of his time in the autism unit to the morning as soon as he gets to school. Currently he spends about 30 minutes in the unit every morning to get prepared for his day. Ms. Annie talks to him about the day's schedule (library or art or show-and-tell) and any changes from routine such as a pep rally or Ms. Simmons being out for the day. They also work on social stories (A Social Story™ describes a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses in a specifically defined style and format.) to address behavioral issues or learn rules for social interactions such as conversation or how to play with friends. The planned change will be to phase out the time in the afternoon that he has been going to Ms. Annie's room. Because the goal is to mainstream Aidan as much as possible, we want him to stay with his class so that he is a part of the normal school day and can enjoy being part of the group. We'll still have him go to Ms. Annie's room in the morning - he really needs this for starting his day off right, and he really seems to enjoy starting his morning that way - but in the afternoon he'll simply stay in Ms. Simmons room and go with the rest of his class to the car line.

Apart from those changes, Aidan will continue to have an aide in class with him at all times and will still have the safety net of Ms. Annie's room should he need to work independently because of behavioral or focus issues. Ms. Simmons stressed his need for an aide. She said that he tends to wander and drift during his work or reading time and needs that support to keep him focused and on task. This is something we very much agree on and I'm glad, because I fear that if we took this support away it would set him up for failure.

The IEP meeting to determine what happens next year should happen in May. Until then, we hope to see lots more progress and lots of fun in Ms. Simmons' kindergarten class. Aidan loves his friends and he loves Ms. Simmons and the predictability of her classroom and her rules. We're so grateful to have her and Ms. Annie to teach and support Aidan every day.

Best Friends

For autistic children the idea of friends is very different.  Their interests are often so focused on one or two specific things (for Aidan it's trains and storm-chasing, but it's branching out and often includes Star Wars or related things).  Because of this, it is often hard for neurotypical kids to relate to autistic children because they get bored with the autistic child's single-minded interest in something.  Also, autistic kids have a hard time understanding social mores.  There is no "polite" where the truth is involved.  If you're bothering him, you're bothering him and he's going to tell you.  If he has something to tell you about something you said (even if it doesn't seem related) he's going to interrupt and tell you (he may even think you're done talking because he can't read your face to know that you were continuing a thought).  Most neurotypical kids don't have the maturity or the patience to put up with the oddities that make up autism, and so they do one of two things: they either make fun of the child endlessly, or they just stop playing with the child.

Aidan has two true friends (I would say three, but he hasn't seen Hayden in so long, I'm not really sure where their friendship stands).  One of those two friends is autistic as well.  Jacob is the same age as Aidan and about the same level of functionality as well.  Because they live by most of the same social rules, they get along well.  When one has reached his limit of socialization, the other is usually at about the same point and they separate with no feelings hurt to give themselves time to reset and refresh. They both have similar single-minded interests and so they can share those focuses with each other without getting bored.  It's interesting to see their interaction, but I understand why they get along so well.

Aidan's other best friend is Jonas.  Jonas is a completely typical little boy, in every sense of the word.  What's very interesting though, is that he somehow seems to understand Aidan's actions and oddities and needs and he responds to them with compassion and patience instead of fear or disgust.  Don't get me wrong - the two have arguments and fights, just like any other two little boys would.  But Jonas doesn't fight unfairly, he doesn't take advantage of Aidan's limitations of language or social understanding (and trust me, I've seen most every other kid Aidan has played with do this very thing).  Aidan's imagination and social competency has grown so much since he's started playing with Jonas and it's amazing to watch him grow when he's around this little red-haired kid.

What I'm curious about, and may never learn the answer to, is how and why Jonas, unlike all the other neurotypical kids Aidan has met, is able to mold his own behaviors and sociality and methods of playing to suit what Aidan needs.  He's open-minded and compassionate (and very mischievous!) and he genuinely enjoys playing with Aidan.  I wish I understood what was different about how this kid sees the world so I could use it to help other people better adapt to their peers who are anything but typical.  What lessons has this six year old kid learned that the rest of us need to be taught?

Scary week

Tuesday afternoon began a few of the scariest days ever.  Aidan had been playing in and out of his room all day, had just eaten lunch, and we were all just chilling out.  Jeremy had just gotten back from some job interviews and was sitting on the couch next to me when we heard Aidan start crying/screaming.  I got up and went in to check on him (he'd been watching television quietly) and he was on the floor with his television on top of him.  I pushed the tv off of him (it's a 19 inch old school tube tv) and tried to get him to talk to me.  He was bleeding and had a huge knot between his eyes on his forehead, and was screaming in pain but wouldn't respond to me or really even look at me.  He was completely limp and I couldn't figure out what was wrong with him.  I finally sat him up to clean the blood out of his mouth and he threw up.  At this point, we decided he had a concussion at the very least and he HAD to go to the hospital.

We loaded Aidan up in the car, and Jeremy drove - I had to hold Aidan up because he wouldn't hold up his head, was still very limp, although conscious.  He kept dozing and so we kept him awake because I wasn't sure if he was just sleepy or if he was passing out.  He repeatedly asked where we were while we were driving to the hospital.  When we got to the hospital, they were pretty quick about getting him back to a room, which was very good I believe.  They checked him out and were as concerned as we were I believe.  Aidan's body temperature was low (96.4 F) and he was vomiting and lethargic and most non-responsive.  They let him go ahead and go to sleep/pass out while they were doing their exam.  They took him back to get a CT scan done on his head to check for bleeding, swelling, or fractures and fortunately that came back clean.  Because he was still acting unresponsive and was continuing to vomit, the doctor consulted the Ped's doc who advised that Aidan spend the night for observation.

That night, Aidan continued to be unable to keep even liquids down and was fairly out of it - he didn't speak hardly, even to tell us something hurt.  Most of the time he just slept.   They put a heart monitor on him and checked his vitals every 2-4 hours just to be safe.  The next day around noon the pediatric doc came in and checked on Aidan, and because Aidan was still very out of it, not responding well to us talking to him and still unable to keep anything down, the doctor decided it was best for him to stay a second night.  By that evening, Aidan was acting a bit better.  Still tired and very quiet, but able to keep liquids down and actually responding to whatever we said to him or asked.

By the next day Aidan was doing so much better so the doc let us go home.  Just the process of packing up and driving home exhausted Aidan and when we got home we ALL went straight to bed and slept for a couple of hours.  Aidan actually ate some food at the hospital earlier that day and I think he also had a little bit of a pb&j sandwich before going to sleep that night.

Today, Aidan is mostly back to himself.  He has a nice shiner, and still tires easily, but he's up and moving around more and is much more talkative.  He even has his bratty attitude back for the most part!

I think we might buy a flat screen for him, even though the television that attacked him still works just fine.

Things Every Parent of a Child With Autism Wishes You Knew

You know from a previous post what every child with autism wishes you knew.  Now you can see what every parent of a child with autism wishes you knew.

 From Katie Duzan:

• Kids with autism are not bad, naughty, or wild hooligans that are a danger to society. They are not products of bad parenting or unloved children. In fact, you'd be hard pressed to find better parents than a lot of the parents of autistic kids. Most families have a single autistic child and other neurotypical kids - proving that it's not logically the 'nurture' that is missing. Our kids do not need physical punishment. Here are some studies on why physical punishment is a bad idea anyway, let alone with children who have problems with relationships and development as it is.

• Autistic does not mean Rainman. Yes, some autistic children are savants. But not every autistic child has a "gift".

• On the same note, not all autistic children are mentally retarded. Quite the contrary, most autistic kids are just average IQ. It's just hard to test when you can't tell what the child understands because they don't speak.

• Our kids may look the same, but they're not. Autism is a hidden disability - meaning that if you looked at a photo of an autistic child, you wouldn't be able to tell from their looks they had a disability. That doesn't mean it's not real. Type 1 diabetes is an invisible disability, too. Keep in mind invisible doesn't mean it's not there. You just have to look closer.

• Autism is not a cop-out. Visit a household with an autistic child during the day to witness what autism REALLY is. I promise, it will blow your mind.

• We parents are not martyrs. If you think special needs' parent's patience extends to rude and/or ignorant people, think again. We are very protective of our children, and we get defensive and angry just like everyone else. Don't be the one to push that button.

• Our kids can hear you, even if they're not looking. And odds are, they understand exactly what you're saying. They don't respond to things like other kids. Watch what you say, because autistic kids also have fantastic memories.

• Stimming may seem odd, but it's perfectly natural. You probably stim, too. Click your pen? Chew on your pencil? Play with your hair? Chew gum? Yeah, that's stimming, too. My kid likes to run in circles more than click his pen... It's a matter of preference. But everyone does it.

• We are just parents. They are just kids. We will make mistakes. So will you.

• You have no idea what really goes on in our lives. We are juggling meetings with the school district, doctor appointments, constant barrages of evaluations along with therapies and teacher meetings. We get crushed at least once every six months by evaluations that compare our child to others and note their massive failings (rather than their progress, in most cases). We go through it so much that there's not even enough time for us to heal. There is a constant gaping hole in our heart from hearing about how our children are not the same.

• We want to know about our kids just like every other parent. Please don't think that we use autism as an excuse. We can't fix a problem unless we know about it. It is more of a challenge to teach our children, but we want to teach them.

• Pride and ego left us long ago. Go to a grocery store, doctors office or meeting with an autistic child throwing a tantrum and you would totally understand. It fails to phase us parents after a few hundred trips, although the stares and uncaring looks still sting.

• Despite the challenges with our children, we love our lives. We love our kids. We don't think they need to be 'fixed' - just 'helped'. We want our children to succeed - on their own terms. We don't ever want pity, although a kind ear is appreciated more than you could ever imagine.

• We hate talking about the "could have's" or "should have's" of autism. Especially if they can't be fixed. We can't go back in time and change whether or not we got an epidural, had a c-section, had preterm labor or fed our child formula. If there's nothing we can do about it, there's no use telling us. We guilt ourselves constantly anyway, we don't need anyone else's help. There's a difference between helpful and hurtful. If you walk that fine line, remember to be kind.

• We love our kids with all our hearts. Because of (not in spite of) their differences. They have taught us more than we ever imagined we would know. To us, different is our normal.

• We know our kids love us. We don't need hugs or kisses to prove it (although some autistic kids are affectionate!). We know anyway.

• No two autistic kids are alike. Some kiss everyone they see. Some hardly stim at all. Some rock in the corner. Most are very happy. If there's a diagnosis, there's no need for second guessing. And if the parents think that their child has autism, they're probably right. Disabilities are frightening to parents, and it takes a long while to accept the possibility. If a parent voices a concern, they have already analyzed it to no end. Accept the possibility.

• Autism diagnoses are not handed out easily. It takes months to see a specialist, and usually several appointments to get the autism diagnosis. Doctors are very sure before they label a child, and won't give a diagnosis if there's any question whatsoever.

Storm Chasin'

So, as you all may know (or not know...), Aidan wants to be a storm chaser when he grows up.  Now the thing is, he has a hard time with loud noises so the whole thunder thing gives us a bit of a setback.  Basically I've just had to remind him that if he wants to be storm chaser then he's going to have to LIKE thunder and get excited by it instead of scared.  So far I think it actually worked.

Anyways, the other day it was kind of storming off and on and when we thought it had passed we ran out to run some errands.  Well, the storm clouds returned and it started raining and when we got out to the car we noticed what looked a lot like a wall cloud.  Aidan assured us that this was, in fact, most definitely a wall cloud (he's the storm chaser, he would know).  So we kind of humored him and since it wasn't raining THAT hard (at least, not yet), we drove a bit out of our way and as far as he was concerned we were storm chasing.  Not even halfway home the bottom dropped out.  We literally couldn't see more than 10 feet in front of us, the wind was gusting really hard, it was lightning like crazy.  Aidan was thrilled to be out in a real live severe storm and kept talking about the wall cloud and telling us all kinds of weather stuff.  Scary drive but in the long run quite fun.

So now, whenever there's any hint of clouds in the sky Aidan thinks it's going to storm and he wants to go storm chasing.  He's so into it that he tried to convince us to buy him a video camera when we were at Best Buy on Tuesday.

I'm pretty sure that didn't have anything to do with the meltdown he had as we were checking out - a melt down that lasted like... 45 minutes total.  That was a painful meltdown with lots of injuries all around.  And whatever it was that set him off, seems likely to be the same thing that sparked my migraine less than 24 hours later.  Probably weather related as well.

Either way, the point of this whole thing is just that Aidan is still going strong on his plans to be a storm chaser.  He wants me to call a storm chaser and find out if he can ride with them on one of their storm chases... I told him they probably wouldn't let him... for insurance reasons of course.