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.

End of Year IEP

Today was the IEP meeting to determine what will happen to Aidan next year.  He's done great so far this year (at least since he got moved to Johnson), and we are happy with the progress he's made.  Thankfully, they didn't want to try to move him back to Creekside (I'd have had a come-apart if that had even been mentioned as a possibility) yet.  I wanted him to move on to first grade, but it was decided that he didn't do well enough in the reading portion of testing to move on.  They think he'll do better repeating kindergarten and really solidifying the skills and knowledge offered there, rather than moving on to first grade which is significantly more difficult.  Plus, it requires him to work independently and he's not really ready for that yet.

They're going to work on keeping him in the mainstream class for a longer portion of the day, and in order to do that they're going to try to make at least a part of the classroom more sensory friendly for him.  He'll keep an aide with him for as long as he needs one, and then will transition to a peer partner if possible.

I'm not sure how I feel about any of this.  Maybe I'll write more later once I have had more time to process it... and am not sick.

From "Love That Max" : Top 20 Reasons Moms of Kids with Special Needs ROCK!

Love That Max: Top 20 Reasons Moms of Kids with Special Needs ROCK!
Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

Melt Downs

Last week Aidan had a huge meltdown on Wednesday and another the next day.  He had gone so long before that without having a meltdown - probably at least 6 months, maybe more.  I don't know what was different or what had been bothering him that made it so easy to set him off, but one simple little thing didn't go the way he expected it to and he fell apart. 

Wednesday (which was when the full moon was - could this have been the underlying cause?) the trigger was as simple as taking a lego toy away from him because he took it outside.  It wasn't a punishment, and he could still have it inside.  I explained to him that if he took it outside to play with it with his friend, that he could drop it and break it and even lose pieces.  He threw a mini fit and so I told him that he could come inside (it was bordering on a meltdown at this point, but I didn't recognize the signs).  He dried it up and went back to playing with Robby (the next door neighbor), so I thought everything was alright.  Not five minutes later, I heard him in the garage screaming his head off.  I went out there and he was crying and screaming about his lego toy.  He wouldn't tell me what was wrong, but he was obviously mad about something.  Once again, I told him he could come inside if he couldn't dry it up.  This time he didn't though, he only became more enraged.  Because of that I attempted to take his hand and lead him inside - of course, that didn't work.  His self-control completely dissolved at this point, and as I tried to pick him up to carry him inside he began to shriek and to hit and kick me.  It took me a couple of minutes to even manage to pick him up.  Stupid me, I still didn't recognize that this was a meltdown at this point. 

Once I got him inside, I put him in his room and closed the door.  Usually he calms himself down and cries for a little while and then is perfectly fine.  Not this time.  He began hitting the door, throwing things (trash can, toys, toy boxes, tried to throw the television), and screaming.  I went in and he started hitting and kicking me, so I held him - I finally recognized that this was a meltdown, but of course that didn't really matter at this point.  Once I got him to stop hitting and trying to throw things, I sat in the floor and he laid with his head in my lap and allowed me to rub his back.  He was still screaming and crying "mamamamamamamamamama" - not anything to do with me, this is just a noise he makes when he's extremely stressed or overstimulated.

This whole meltdown lasted around 30 minutes, and afterward he wouldn't talk or look at me.  He had calmed down enough that I felt it was safe to leave him in his room.  A little while later he came out and ate dinner and was talking and making eye contact again.  When I put him in bed, he apologized for being unhappy and throwing a fit, telling me he couldn't get control.  He was aware it was a meltdown, even if I wasn't.

The next day at school he had a meltdown as well, this one only last about 15 minutes according to the aide.  Apparently he couldn't sit down (he told me he couldn't), and when he melted down he told her (or rather screamed to her) that he couldn't get control.

I don't know what sparked this behavior.  He's been perfectly fine since then.  I have no idea what happened to be able to prevent it in the future.  Maybe it was my stress over school and planning a bridal shower. Maybe it was the full moon.  Maybe it was a string of events over the previous several days that none of us could have known would lead to a meltdown.  Whatever it was, hopefully I'll recognize earlier in the meltdown next time, that it IS a meltdown instead of fueling it into a bigger meltdown.

Self-fulfilling Prophecies and Service Providers who take advantage of parents.

It seems so sad to me that there are doctors who, when they diagnose a child with autism, would tell the parents that their child will never speak or be potty trained or live on their own.  It seems sad to me when parents mourn their child's diagnosis as if they were told that their child had died or would die next week.  Autism is not a death sentence!  How many children's parents gave up after being told their child would never say "I love you, Mommy" or be in a normal classroom or any of the other things that other parents take for granted?  How terrible!  It seems like this is a self-fulfilling prophecy.  If you and your child are told that what they have is all that is possible and they just have to deal with it, then isn't it possible that they will never try for better? 

What's worse is that there are doctors who will twist it and make it worse.  "Unless you take your child to a speech therapist, an occupational therapist, a behavioral therapist and take these medications and do chelation therapy and bariatric therapy and eat only certain kinds of food, then your child will be terrible and never talk to you and can't accomplish anything.  Parents spend their entire lives trying to make a better life for their children.  It's what we do.  And when we're faced with a problem we didn't expect then we ask professionals for guidance.  But what's terrible is when these professionals take advantage of us and our desire to do what's best for our children.  We spend thousands or millions of dollars on the various therapies and classes and diets that we're told will help.  But does it really help?

I can't afford all the different therapies that might benefit Aidan.  When he was diagnosed I was a single mom who made under $30k a year.  I didn't understand the GFCF diet, and didn't really see how I could consistently change his diet across all the different caretakers he had (myself, my mom, his babysitter) and even afford to buy the best possible foods for him.  Even though the doctor that diagnosed him said he needed speech therapy, I couldn't get the school system to agree, so I had to work with him on his speech.  I couldn't get them to do occupational therapy either (teaching him basic life skills like potty training or buttoning his pants or throwing and catching a ball) so I had to teach him those things. 

The thing is, I think I've done a pretty good job with him between myself, my family and most recently the amazing people at his school.  He talks more than ever, although you can't always understand him.  He's completely potty trained (which a year and a half ago I worried might not happen) and can button his own pants.  He's learned to ride a bike and throw a ball and play video games and play make believe.  It's all the product of a lot of hard work: his AND mine as well as my parents, Jeremy, our family and friends, and his teachers most especially Miss Annie. 

I guess I just feel like a lot of doctors and service providers and Jenny McCarthy's see parents who are desperate to help their child, and they take advantage of their fear and helplessness.  As parents we're supposed to be able to fix everything and when we can't then we feel like we're letting our children down.  There are people who prey on that and I really think they stink for it.  We're told our child can only be "cured" if we do xyz therapy and abc diet and take them to Dr. So-n-so, so we do what we're told.  Maybe sometimes the therapy is necessary, I don't deny it, but I think that a lot of it is ridiculous and experimental and outlandish and just a way to make money off of desperate people.

I'm done ranting now.

Autism Awareness

April is Autism Awareness Month!  I'm both excited and saddened that we get our own month now.  It's great that we have a chance to educate people and gain support for our cause, but it's sad that Autism Spectrum Disorders are common enough for us to get an entire month dedicated to our children.  In honor of the month I've gathered some information for those of you who don't necessarily know all the in's and out's of autism.  My information comes from the CDC and Google Health, but you should also check out Autism Society of America.  Don't forget to join us Saturday morning for our Autism Walk - or find one in your own hometown if you aren't in Huntsvegas!

And to all of you who have given us so much support since Aidan's diagnosis, thank you!

Prevalence

• It is estimated that between 1 in 80 and 1 in 240 with an average of 1 in 110 children in the United States have an ASD.
• ASDs are reported to occur in all racial, ethnic, and socioeconomic groups, yet are on average 4 to 5 times more likely to occur in boys than in girls.  However, we need more information on some less studied populations and regions around the world.
• If 4 million children are born in the United States every year, approximately 36,500 children will eventually be diagnosed with an ASD.  Assuming the prevalence rate has been constant over the past two decades, we can estimate that about 730,000 individuals between the ages of 0 to 21 have an ASD.
• Studies in Asia, Europe and North America have identified individuals with an ASD with an approximate prevalence of 0.6% to over 1%.

•  

• Approximately 13% of children have a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.

Economic Costs

• Recent studies have estimated that the lifetime cost to care for an individual with an ASD is $3.2 million.
• Individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,110–$6,200 per year. On average, medical expenditures for individuals with an ASD were 4.1–6.2 times greater than for those without an ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4–9.5 times greater.

Signs of Autism (there were a lot of "a-ha!" moments the first time I read these after Aidan was diagnosed)

Most parents of autistic children suspect that something is wrong by the time the child is 18 months old and seek help by the time the child is age 2. Children with autism typically have difficulties in:

• Pretend play
• Social interactions
• Verbal and nonverbal communication

Some children with autism appear normal before age 1 or 2 and then suddenly "regress" and lose language or social skills they had previously gained. This is called the regressive type of autism.
People with autism may:

• Be overly sensitive in sight, hearing, touch, smell, or taste (for example, they may refuse to wear "itchy" clothes and become distressed if they are forced to wear the clothes)
• Have unusual distress when routines are changed
• Perform repeated body movements
• Show unusual attachments to objects

The symptoms may vary from moderate to severe.
Communication problems may include:

• Cannot start or maintain a social conversation
• Communicates with gestures instead of words
• Develops language slowly or not at all
• Does not adjust gaze to look at objects that others are looking at
• Does not refer to self correctly (for example, says "you want water" when the child means "I want water")
• Does not point to direct others' attention to objects (occurs in the first 14 months of life)
• Repeats words or memorized passages, such as commercials
• Uses nonsense rhyming

Social interaction:

• Does not make friends
• Does not play interactive games
• Is withdrawn
• May not respond to eye contact or smiles, or may avoid eye contact
• May treat others as if they are objects
• Prefers to spend time alone, rather than with others
• Shows a lack of empathy

Response to sensory information:

• Does not startle at loud noises
• Has heightened or low senses of sight, hearing, touch, smell, or taste
• May find normal noises painful and hold hands over ears
• May withdraw from physical contact because it is overstimulating or overwhelming
• Rubs surfaces, mouths or licks objects
• Seems to have a heightened or low response to pain

Play:

• Doesn't imitate the actions of others
• Prefers solitary or ritualistic play
• Shows little pretend or imaginative play

Behaviors:

• "Acts up" with intense tantrums
• Gets stuck on a single topic or task (perseveration)
• Has a short attention span
• Has very narrow interests
• Is overactive or very passive
• Shows aggression to others or self
• Shows a strong need for sameness
• Uses repetitive body movements

March Report Card (First since December)

We got Aidan's report cards back today (he gets one for his autism class and one for kindergarten), and he's done great!  I figured you would all love a run down of his progress this year.

Annual Goal Progress Report

Goal: Aidan will select appropriate voice level when interacting with others with 90% accuracy by 4/22/10

• Progress - 2 (Some progress made)  
  
• Extent - 2 (Anticipate Mastery)
• "Has made progress but on some days still has to be reminded."

Goal: Aidan will following one- and two-part oral direction with 90% accuracy by 4/22/10

• Progress - 2       
• Extent - 2
• "Has done very well following directions.  When he does not want to he has to be prompted."

Goal: Aidan will exhibit appropriate social skills by controlling his excitement, using an inside voice, use appropriate social communication skills and will make and keep friends 80% of his school day by May of 2010 

• Progress - 2
• Extent - 2
• "Has made friends in kindergarten.  Still has to be reminded to be quiet at times.  Will get upset if staff prompts him or shows him a sign to be quiet.

Goal: Aidan will demonstrate appropriate behavior by following 2 step directions, using an inside voice, remaining calm and will ask for a break/his music when he feels himself becoming over stimulated 3 out of 4 times by May of 2010.

• Progress - 2      
• Extent - 2
• "Has done very well asking for breaks and his ear covers to get away from the sound before it gets too loud for him."

Goal: Aidan will improve his basic living skills by demonstrating the ability to fasten and unfasten hook and button closings on his clothes and by being able to catch a ball that has been tossed to him from a few feet away 3 out of 4 times by May of 2010.

• Progress - 2
• Extent - 2
• "He is able to catch a ball and has had no issues buttoning and unbuttoning."

___________________________________________________________________________

Kindergarten Report Card Assessment

• S (Satisfactory - 80%-100%) - Identifies Letters: (they give a list of all the ones they expect him to know, large and small, but let's face it, he knows ALL of his letters little and big...)
• S - Identifies beginning sounds: M, T, A, S, P, C, I, B, N, R, D, K, F, O, H
• S - Recognizes high frequency words: I, am, the, little, to, a, have, is, we, my, like, he, for, me, (didn't know "with"), she, see, look, they, you, of, are, that, do, one, two, three, four, five
• S - Identifies numerals: 4, 8, (thought 13 was 31), 1, 3, (14 was 41), 9, 15, 0, 12, 6, 2, 11, 7, 10, 5
• S - Can count to 30 --- counted to 66
• S - Uses drawing, scribbling, inventive spelling to express thoughts about personal experiences.
• S - Spells name correctly
• S - Handwriting: prints letters, numerals, and first/last name correctly
• S - Understands relationships: Extends a pattern, rhyming words, opposites
• S - Identifies coins: penny, nickel, dime, quarter
• S - Obeys school rules
• S - Uses good manners
• S - Gives best effort

He also got an "S" in music and PE, and of course already knows his colors, and shapes.

____________________________________________________________________________

So obviously we're quite proud of the kid.  He's so smart.  I worry that they'll want to send him back to Creekside to do Kindergarten again except in the mainstream classroom.  I really think that's a bad idea for a lot of reasons.  First of all, he's way too smart and too far along to do kindergarten again as his report cards show - he'd be terribly bored and would have poor behavior and attention span because of that.  Also, Creekside doesn't have the resources that Johnson does - they only have one special ed teacher and a couple of aides.  I believe Aidan needs to start out where he'll leave off this year, doing about an hour or two in the mainstream classroom WITH an aide and be in first grade.  He needs to work into a full day in the mainstream class with an aide, and then slowly have the aide with him for less and less time each day.  We'll have an IEP meeting at the end of April or beginning of May and you can bet your britches I'll be insisting that things happen the best way for Aidan to succeed.

Routine Interruptions

This week I'm reminded of how tenuous Aidan's hold on a normal life is.  Before Spring Break he had sooooo many days in a row and was mostly really easy to deal with at home too.  During Spring Break other than the two of us getting on each other's nerves a bit, he still did great.  But when he went back to school this week the feces hit the air circulation device so to speak.  He's had two bad days in a row.  Yesterday he was hitting kids and throwing things at them and not behaving well in general.  Today he was talking back to his teachers and pushed one of his classmates in the hallway because he wanted to be the line leader.  Ms. Annie says that they're doing SAT's this week and that the mainstream kindergarten teacher was out today.  Yesterday Ms. Annie was gone part of the day on a field trip. 

Aidan isn't great at dealing with transitions or changes in his routine.  It's one of his weaknesses.  Of course, he can't let that weakness rule his life or affect his behavior forever.  He's got to learn how to be flexible and control his own reactions to the changes in his life.  The only way I know how to help him do this is with consistent consequences no matter what the reason for his poor behaviour is.  Yesterday I gave him a warning that if he had another bad day at school he would not be allowed to play with his DS today and would lose his allowance that he gets on Sunday.  He's been doing great with helping out around the house and keeping his room clean because he gets a weekly allowance when he meets the requirements for earning it.  I explained to him that school was another of his responsibilities and he had to be good there just like he had to feed the kitties and keep his room clean in order to earn his allowance.  Today when he had a bad day and was told he wouldn't be getting to play with his DS or get his allowance on Sunday, he whined a little but seemed to understand that his actions had consequences and the consequences were fair.


Figuring out how to handle (and help him handle) the major and even minor changes in his life and his routine is quite a hurdle to jump, but I think we'll make it.

Autism Awareness Card

I designed these cards for those of us who know and love someone with autism and sometimes have to deal with the funny looks or the unwanted advice from people who don't know any better.  If you'd like me to make you some, let me know and I'll be happy to, I just have to buy the actual paper to do so and haven't gone to the store yet.  Of course I would replace my email address with yours.  If there's anything you think I should add, let me know (not sure where I'd fit it in, but I'm sure we'll manage).

What's New?

Just a quick update on what's been going on the last few weeks in the wonderful world of Aidan:

• Aidan has been spending as much as an hour at a time in the mainstream kindergarten class, with an aide.
• Because of his difficulties focusing and remaining calm, we are considering whether he would benefit from ADHD meds or a change in his diet.
• Other than the concentration and hyperactivity, Aidan has had a long string of great days at school and his attitude has been much more manageable during this time, which is a great relief and much more enjoyable.
• Aidan's class has been practicing and preparing for the Special Olympics in April.  Because Aidan is not in second grade, he is not able to participate, and is technically not permitted to even go and watch.  Miss Annie (Aidan's teacher in the autism unit) spoke with the person in charge and got permission for Aidan to attend even though he is still not going to be allowed to participate.
• A couple weeks ago, Aidan decided he wanted to be an Olympic ice skater.  Jeremy and I went ice skating a couple of times without him (don't want to break our own necks trying to keep him from breaking his), and then this past weekend we took him skating.  He did great - started out holding on the wall, then onto a traffic cone, then for a while he skated without either.  I'm so proud of him.  He wasn't sure at first, but has decided he wants to keep learning to skate.  He doesn't want official lessons though, he just wants me to teach him for now.
• Today we discovered that Aidan has his first loose tooth!  It's official, he's finally becoming a big boy.

Ironic, but not in a good way.

Autistic Child Ruins Marriage He Was Born to Save (The Onion)

HOUSTON—With the challenges accompanying his developmental disorder widening the already vast gulf between his parents, autistic child Evan Thomas, 3, continued this week to destroy the failing marriage he was brought into this world to save.

Evan, who through the very act of being born was entrusted with the task of resolving lingering conflicts, soothing deep-seated contempt, and restoring intimacy to Mark and Sharon Thomas' long-strained relationship, has thus far utterly failed in his assigned duties, sources reported Monday.

"It's so much work taking care of Evan, and Mark just refuses to help out as much as he should," said Sharon Thomas, who endured a long, agonizing childbirth to put an end to the couple's constant bitter arguments. "It's so frustrating. I don't get any time to myself because Evan needs attention like 24 hours a day."

"I never asked for this," Sharon added

According to sources, Mark Thomas, 32, had always wanted a healthy, happy, completely normal son to provide a quick and easy fix to all of his marital problems. However, rather than allaying their trust issues and instantly making everything all better, Evan has reportedly driven a deeper rift between his parents by prompting fights about who is to blame for his condition.

"The doctors are constantly telling us that it's not anyone's fault, but if you'd ever met Sharon's brothers, you'd know that something's not quite right on that side of the family," Mark said. "We probably shouldn't yell in front of him as much as we do, but he doesn't really pay much attention and it honestly doesn't seem to bother him."

"In fact, nothing seems to bother him," Mark continued.

Although Evan was only diagnosed with autism six months ago, Mark said it was clear right after bringing him home from the hospital that something was wrong with their son, since their lives did not take a dramatic 180-degree turn for the better, lingering disputes did not just melt away, and years of underlying tension were only brought into sharper focus.

The child, who according to his parents rarely smiles or acts cheerful, has left many in the household concerned that he's not committed to mending the broken relationship. Moreover, during the past three years, Evan has reportedly done almost nothing to curb Mark's controlling nature or Sharon's cruel emotional abuse.
Evan has also failed to utter the words "mama" or "dada," thereby ruining any chance his parents might have had at forging an instantaneous, all-healing bond.

"Nobody told me I'd be so exhausted and cranky all the time," said Mark, who had anticipated that a son would create the mutual respect that his marriage has always lacked as opposed to making him feel overwhelmed and trapped. "Now, I just get nagged about never dealing with Evan after I bust my ass at work all day."

Mark and Sharon also complained that the highly structured schedule they're forced to keep to prevent Evan from "acting up" has severely strained their social life, causing them to miss a recent Super Bowl party at a neighbor's house that all of their friends without special-needs children were at.

In 2006, before giving birth to Evan, the awful couple attempted to salvage their relationship by purchasing an American pit bull terrier puppy. But the dog, who was reportedly a real pain to take care of, lacked the discipline to put in any work on their miserable marriage and always demanded too much affection.
Family members told reporters they weren't surprised Evan has not yet managed to transform the couple's dysfunctional marriage into a healthy and loving one.

"Oh God, they should never have had a kid," Evan's grandmother Janet Harmon said. "She should have gotten her tubes tied like she threatened to do in the first place."

Mark and Sharon said they were currently trying to get pregnant again in hopes that a new baby would take off some of the pressure of raising Evan all alone.
________________________________________________________

I love how many articles blame marital problems on special-needs children.  It's so painfully ironic.  Of course, it's much easier to blame all the problems in your life on a child who has no choice or control over it, rather than take personal responsibility for your life sucking so bad.  Grow up people.  Really?  I couldn't even find this article funny, it's just too true for so many people.

Autism is a Gift

I grew up watching and reading X-men.  In that world, humans had "evolved", via mutation, to another level.  Normal, unevolved humans considered the mutants to be freaks and disabled.  Because of their superhuman abilities the mutants often had a very difficult time functioning in the real world.

Sound familiar?

In that world, our children would be taken in by Dr. Charles Xavier and their abilities would be honed and they would be taught how to use them to change the world.  Their "sensory integration disorder" would be superhuman hearing and sight and touch and taste.  Their way of thinking in pictures or patterns would be such an assett and we'd see neat little montages of how their brains worked. 

Autism is not a punishment, a curse, a disability, a disease.  It is a neurobiological change to the human body and brain that results in a different or better set of abilities.  Our children don't think like us, they don't experience the world in the same way we do.  Because of this, we label them as "disabled" and give them therapy.  How can we take the knowledge that these children are different and possibly BETTER and instead of trying to change them and make them more like us, help them to take advantage of the way they see and think and feel?  The differences they could make in this world could be profound. 

Where would we be today with Mozart, Van Gogh, Einstein, Newton, Tesla?  They would likely be diagnosed with some Autism Spectrum Disorder today.  Perhaps that label should lose the word "disorder" and find another word that still sets them apart, just not in a negative way.  I'm not saying we shouldn't teach our ASD children differently - we obviously should! Just like we offer different opportunities to a child who is phenomenal at sports, and we put a child who is extremely gifted in the advanced classes, we need to make sure we're not trying to change our children to make them more like us.  Maybe we should be trying to be more like them?  Maybe we should change the world to fit them, instead of telling them they should change to fit the world.

Surprise Surprise

Apparently, Aidan  can do math.  Go figure.  We know he's a smart cookie, there's no doubt about that, but I don't think I was even doing math (okay I still don't do math), let's say my brother instead, I don't think he was doing math that quickly when he was 6.

So this morning while Aidan's getting ready for school, I asked him if he was spending time in the regular kindergarten class and what he's learning in there.  He says he learns about toys, of course, because nothing else is as exciting as new and strange toys.  I asked him if he was doing any math and he said yes.  Well as you can imagine we started asking him math problems.  At first they were simple. "If you have two bakugans and Miss Annie gives you another one, how many do you have?" "Three." No hesitation.  "If you have three bakugans and one of them breaks how many do you have?" "One." Again, not a pause.  "Alright... if you have five bakugan and you buy two more, how many do you have?" "Seven!" o.0

It was such a surprise.  He got bored after that, so of course no more math problems today.  But really? After all of this, he's a math whiz too?  Gee, I got a kid genius on my hands guys!

You'll Never Walk Alone

  Every time I hear this song, I just want to grab Aidan and hold him and sing it to him.  This song is on a commercial during the olympics at least once or twice an hour.  And every time it brings tears to my eyes.  If you haven't heard it, go find the Judy Garland version and listen.  An autistic child should never walk alone (no child should), and I will always always always support Aidan's dreams. (This week the dream is ice skating)

When you walk through a storm

hold your head up high

And don't be afraid of the dark.

At the end of a storm is a golden sky

And the sweet silver song of a lark.

Walk on through the wind,

Walk on through the rain,

Tho' your dreams be tossed and blown.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

Seriously folks?

I have talked before about how much of a blessing Aidan is.  Today I wanted to scream, and this was before he even got home.  It wasn't anything he did though, rather something someone else said.  If you hadn't heard: Bob Marshall, R-VA: disabled kids are God's punishment for abortions?! http://tinyurl.com/yalfvx7.  

Seriously Bob?  Wow, "conservative Christians" can really put their foot in their mouth sometimes.  Did you even bother to think before you spoke Bob?  Honestly, I'm not sure what he was thinking.  According to Bob, "The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children," said Marshall, a Republican."In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There's a special punishment Christians would suggest."  Okay... so what about all those mothers who never had an abortion but our children were born with a disability?  And what about all the women who had an abortion and their subsequent child wasn't disabled?  The logic in that statement is SO far off it's beyond sad. 

The biggest problem I have with Bob's statement is that he considers disabled children a punishment at all.  This is such a prejudiced and hateful statement!  Anyone who has a child with a disability knows that their child is not a punishment but a gift!  No, it's not easy, but how lucky are we that we were good enough and strong enough to receive such a wonderful challenge? 

Bob, do us a favor.  Duct tape your mouth shut so you can't make any other stupid hateful comments.  You make everyone look bad.

The glass half full

A diagnosis of autism often feels like a death sentence when it's first given.  Your mind goes immediately to the fact that your life will never be the same, and there are so many things your child may never do.  It becomes overwhelming to try to determine what services will help your child and when and how soon you can get them, not to mention how the heck you're supposed to pay for all of this since it's usually not covered by insurance.  It would be so easy to be angry, to grieve and mourn what your child could have been, to be depressed over it all.

But take a different look at it.

You are blessed to have a child with such a unique way of seeing the world.  He or she can teach you about things you never even knew you needed to learn.  Only a child with a disorder such as autism can show you how differently the world appears to them.  Only a parent with a child who may or may not ever speak can appreciate so strongly the importance and joy of hearing their little one say "Mommy" or "I love you".  We learn patience, stubbornness, selflessness, hope, perseverance, and unconditional love.

If you can't look at those things as a blessing, then take this and chew on it for a while:  your child has autism, which is pretty much never life threatening (unless your child has comorbid symptoms which prevent them from taking nutrition or something like that).  Imagine that diagnosis of autism and how scared you were when you got it.  Now imagine if that diagnosis were one of leukemia or some other deadly childhood illness.  The likelihood of your child "coping" with or overcoming such a terrible disease is often slim.  You must watch them suffer as they go through painful treatments, and are in and out of hospitals.  Some parents even have to watch their child die.  I can't imagine the helplessness I would feel if Aidan had been diagnosed with a childhood cancer.  It's my job to protect him.  I yell at principals and teachers who I don't feel are doing their best to help him.  But what if the doctors ARE doing their best and it's still not enough?  Who do you yell at then?  At least with a diagnosis of autism, I know my child is healthy, and for now happy.  I can help him to be happy by making sure he learns to overcome his diagnosis, learns to live above and around it rather than just live with it.  I can teach him to not let it control his life and keep him from doing things he wants to do.  I never have to be afraid of dreaming and hoping with him.

Take stock of your blessings... often times they are more significant than you realize.  You were chosen to be part of an amazing miracle, and to be worthy of raising such a special child.

If you aren't the parent of a child with autism, I still encourage you to count your blessings.  It's so easy to be cynical and to think about how crappy life is, especially now when the economy is bad and times are tough.  But look at all you do have!  Did you wake up this morning?  Did you have a roof over your head?  Did you have food to eat and clothes to get dressed?  What else do you have that you take for granted?  A loving and supportive relationship with your family?  Great friends who would come get you if your car broke down at 4am?  A job that may not be your favorite but at least pays your bills?  Life changes drastically when you look at what you have instead of what you don't.

A Different Perspective

It is not until you become a mother that your judgment slowly turns to compassion and understanding.
- Erma Bombeck

As the mother of a child who has autism, I have learned this better than I thought I could.  I'm not saying that I don't sometimes still judge people, I'm not perfect.  But one group that I've learned not to judge is my fellow parents.  Most people, even some parents, when they see a parent whose child is misbehaving or being obnoxious or loud or throwing a tantrum, they glare at the parent as if they are the worst parent in the world.  We're guilty of having done it at least once, even if we don't admit it.  We see the child throwing a tantrum, or talking too loudly in the restaurant, or wearing a diaper even though they should be much too old to do so.  And we automatically think, "oh, if I were that child's parent, what I would do is....".  But you know absolutely nothing about that child or his parent in most cases.  And sometimes, even if you do, your lack of perspective gives you a skewed judgment of what is really happening and how it should be handled.

Aidan has a hard time using the correct volume at the right time and place.  Aidan is very sensitive to sound, light, and smell (and maybe other things he can't tell us).  Aidan has a difficult time with transitions and needs extra warning that something is about to change, and what to expect.  Aidan isn't always able to put into words what he wants or needs and it frustrates both of us.  Aidan loves watching the same thing over and over and over and over.  Aidan loves to sing, and will do so as often as he's permitted to do so, and sometimes when he isn't.  Aidan can't always make eye contact, but he tries to.

But let's assume you didn't know any of those things about Aidan and you came across the two of us at the grocery store.  He starts out talking or singing loudly, and you may not know it but I've given up trying to quiet him down because it isn't a library or the movie theater.  Then, without much warning he puts his hands over his ears and starts acting rather brattishly - you don't pay attention but to him the combination of sounds has become overwhelming, perhaps the loudspeaker came on or more people were talking than before.  He's also hungry and the lights are bothering his eyes, but you don't know this when he starts having his melt down, screaming and throwing a fit because he can't tell me what is making him so uncomfortable.  I have to finish my grocery shopping and I don't have anyone who could have watched him because I'm a single mom and don't always have an immediately available babysitter, or a chance to do it while he's at school.  I know that you're watching me and rolling your eyes and talking behind your hand to your friend about how terrible of a person and irresponsible of a mother I am because I can't control my child, and don't have the common courtesy to take him out of the store so people can shop in peace.

I've learned the hard way never to judge parents for the way their children act, because it requires me to make an assumption that everything else about their life is perfect and they are just choosing to let their child behave poorly.  I can't stand the look I get when Aidan is having a bad day.  I thank God that those days are fewer now than they used to be, but there was a time when I dreaded taking him anywhere in public.  It made me want to carry around business cards so people would stop looking at me like I was a bad person, and looking at my child like he's the devil.

So, next time you're out at a restaurant or shopping, or wherever you may be, and you see a child who's acting like a handful and it annoys you, before you make a snarky comment about how you would handle it... stop.  Think.  Reserve judgment.  Be compassionate.  Smile at the mom who's struggling with her child that is screaming for apparently little reason (don't assume it's just because he didn't get his way), offer to carry something for the dad who needs to pick his little girl up because things are too loud for her and she's in a panic, laugh and join in when someone's child is singing along with the music.  We're so quick to judge people, and it's a hard habit to break.  I was blessed to be given a little boy who could force me to break that habit.

Honestly I think someone secretly prayed I would be given patience.

Thanks, whoever you are.  My test has been awesome!

Oh noes! No circus this year.

We had planned on taking Aidan to the circus today.  Sadly it seems the tickets are sold out.  I honestly dreaded telling Aidan that we couldn't go, because we'd talked about it for a couple of days and he seemed to be really really excited.  I was so proud of him though, when we told him we couldn't go he was upset for a few moments, but was willing to come up with an alternative to keep himself entertained.  I asked him if there was something else he would rather do (I figured he'd ask to go to Sci-Quest or the toy store or something), and he decided he wanted to play with his tornado machine. That was seriously surprising to me.  There was no melt-down, no whining, no begging to go somewhere else or anything.  He was happy to play with his toy (THANKS MAWMAW!) instead of going to the circus.  I feel horrible that he didn't get to go, and that I didn't keep my promise to him, but I didn't realize the circus would sell out!

It's great to see him make progress and learn to take control of his behaviour and his attitude.  I'm so proud of him (even when he has bad days, which are fewer and further between)!