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Wednesday, September 26, 2012

Whoa! Stuff!

Wow! It's been forever since I posted here. It's even been awhile since I posted anything important on Facebook. It's been a super busy summer and is shaping up to be a super busy fall as well. Aidan did Cub Scout summer day camp, he had a camp-in at a Science Museum (they had full run of 4 stories!! Including the shark tank!!), played a day at the beach, spent time in Chattanooga with Mawmaw and Pawpaw, and even got to go visit Papa and Grandma Holly twice before Grandma Holly passed away this month.

In June Aidan was officially diagnosed with ADHD and the doctor started him on Intuniv which is a non-stimulant medication that was adapted from an old blood pressure medication called Tenex. Now that we've got the dosage figured out, Aidan takes 2mg a day in the morning. The difference is amazing. He has a much easier time communicating with us, he has found his volume control instead of being at the top of his lungs most of the time, he has a much better control of his temper, and is finding it much less of a problem to focus on his work at school and at home. It's actually really fun to be around him now that he's staying out of trouble and doesn't get aggressive so easily.

School started back in the middle of August and since then Aidan has only had ONE stick pulled (it's like a check mark on the board, or one time of getting in trouble). It was for talking when he wasn't supposed to, which every kid is going to do at some point. Last year he did that at least once a day it seemed like. His first progress report shows he has 2 A's and a B - the B is in English. He loves Math! He's making friends and doing great at the new school. Friday we got to go on a field trip to see Disney on Ice (how is that educational?) which he was so-so about. Most of it he wasn't interested in but we made it through.

Last night he had a Cub Scout Pack meeting. They gave out all the awards earned over the summer, and I'm pretty sure Aidan earned more than any of the other boys there!!! Here's a list of what he got:

-BB shooting belt loop

-archery belt loop

-hiking belt loop

-kickball belt loop

-art belt loop

-science pin

-one year service pin

-wolf badge (which requires a LOT of work to earn!)

-1 year service pin

-Outdoor Activity Award

-Gold Unit award

Seriously guys, the kid is amazing. Now he'll start working toward his Bear Badge and of course all the other stuff that he can find to get into and earn. Plus he's selling popcorn on top of everything (let me know if you're interested and I'll post the website for you to order or if you're local to me then I can put your order down). We're so proud!!!

Stay tuned, I'm sure there will be even MORE amazing things to brag about on this kid.

Thursday, June 28, 2012

Trying something new

Today Aidan had his second visit to the psychiatrist, and his first visit since he started therapy and school let out. We talked about Aidan's IEP, his grades, and things like that, and then I brought up the discussion we had at the IEP meeting about his first grade teacher and my opinion about whether Aidan has ADHD. (I never did update you guys on his IEP!! Oops! I promise I'll do that soon!) While Aidan's teacher and I answered the questionnaire in such a way that Aidan fell within the bounds of having ADHD, the behaviorist and his special ed teacher (who spent much less time with him) did not answer in a way that he fell there so I guess they balanced out. I asked the doctor what he felt about this and he looked at a couple of things in Aidan's chart. First of all, every couple of visits they give us a little computer on which we answer a survey about symptoms and whatnot. The doctor looked at the results of that and showed me that Aidan definitely falls within the bounds of ADHD according to that. Second, he looked at the records of Aidan's therapy sessions and again felt that Aidan met the requirements based on his impulsivity, restlessness, and irritability/aggression. Ultimately it was decided that Aidan could benefit from starting on some medicine called Intuniv. It is not a stimulant, and has the most effect on the three main problems Aidan has. He'll start out on a low dose and work his way up as you have to do with most psychiatric medications. We'll try it in the mornings so it lasts all day, but if it's a little more sedative than we like then we'll move it to bedtime. My main concern is that Aidan DOES NOT like taking pills (he's yet to be able to get one down)and because these are extended release (they last about 18 hours) I can't crush them up and they don't come in a chewable or liquid. There is a regular version but it only lasts 4-6 hours and can therefore cause some yo-yoing which isn't good. I've been trying to come up with some sort of reward (bribe) to get Aidan to take the medicine so we'll see how that goes. I'm not looking forward to that fight, so let's hope the medication makes enough difference that it's worth it. The main goal is to help him with his behavior as far as his bad decision making (it's hard to think about the consequences when you're very impulsive) and his aggression/meltdowns.

Wednesday, May 2, 2012

Therapy Session #2

Aidan's second ever therapy session was today. He got to talk to the therapist about the incident on Thursday with the fighting, the meltdown Friday and desire to kill himself, and everything else that's been going on lately. When he was done the therapist of course had me come back so we could talk about everything that they discussed and make some plans to help Aidan out.

After talking to Aidan, the therapist concluded that Aidan's biggest frustration and cause of meltdowns is the feeling of being out of control. It can be when he's playing a game, or if he doesn't agree with rules, or if his expectations were one way and something else happened, or overstimulation, or any other form of losing control. We all have issues with this, and it causes some level of frustration for everyone. Aidan's problem is managing those emotions when they happen. The therapist said that emotional regulation is a major weak point for Aidan and so he came up with some things that might help.

First of all, Aidan needs to learn to recognize and label his emotions. Is he angry? Sad? Frustrated? Scared? We're going to try to come up with a chart that he can point to the face he's feeling when he can't think of the name of what he's feeling. Secondly, once he recognizes what he's feeling he has to be able to take the next step which is to calm down until that emotion passes rather than letting it take control and causing a meltdown or aggression toward someone or something. Aidan and the therapist came up with a few options which included a time out, watching TV, playing with the dog, or getting a back rub. We're going to talk about some others later (he's a bit exhausted now after talking to the therapist for an hour). Eventually he's going to have to learn that he can't be in control of everything, especially rules and other people, much less any outward environment or other peoples' actions. Hopefully we can teach him this soon.

Friday, April 27, 2012

A Different Kind of Meltdown

I should have guessed that having Game Day and an assembly at school instead of the normal routine would throw off Aidan's whole day. He was apparently really good all day, but then at the end of the day ran in the hall and when a teacher stopped him and told him to come back and walk he refused to look at her or talk to her. He was cranky in the car about buckling up. Then when he got home I asked him to feed the dogs before he got snack. With lots of griping (as per usual) he got them food, got Muffin the old dog the WRONG Food even though he knows that she ALWAYS eats the same food as Harley the young dog, and then because of his attitude he picked up when corrected for getting the wrong food, he slammed Harley's bowl on the floor and made all the food fly out. I fussed at him and told him to clean it up. At this point the meltdown began.

Normally Aidan's meltdowns involve him lashing out at the environment around him, especially me or Daddy or whomever else is around. Today it was different. He screamed repeatedly that he wanted to kill himself and starting punching himself HARD in the head. I had to hold his hands and try to calm him down for about 15 minutes before he stopped trying to hurt himself. He cried for a while after that, and screamed he hated me several times, but he seems mostly okay now. Well, except that he's still mad at me and wants to pack up his bags and Harley and live in the middle of nowhere and doesn't care if he starves to death as long as he's away from me.... When did I get a teenager?

Anyways, I'm obviously really concerned about the self-harm during the meltdown today. Every so often he will get frustrated and hit himself, although rarely in meltdown mode. Today was so different and I just didn't know how to react. What should I do? He thankfully has a therapy appointment next week.

Thursday, April 26, 2012

Bullying? Maybe, maybe not...

So I think there may have been some bullying at school today - I've emailed the teacher and she's going to talk to everyone involved. Here's what I know: I know Aidan got sent to the principal's office today for throwing mulch at TJ. The reason I'm writing is because of something he said happened in PE today that other students prevented him from telling the coach.

Aidan says that: Boy 1, while they were playing football, was "not playing fair" and when Aidan said something to him about it, Boy 1 "flipped" him onto the ground (he says this happened twice). When Boy 2 tried to defend Aidan from Boy 1 hurting him again, Boy 2 got pushed down. Aidan was going to tell coach, who wasn't available, then Boy 1 got him to the ground again and when Aidan was trying to get up, Boy 1 held him down, and Boy 3 "slid past" Aidan and Boy 2 kicked Boy 3 in the neck. Aidan left the situation at this point which ended the whole thing.

This is what Aidan told me, and granted he can be hard to understand, and I'm not sure if this all happened today or if this was split up over different times, or how much was exaggerated. And honestly, Aidan could have left out any hitting, pushing, etc that he did. Aidan didn't want to tell the teacher because he was afraid that he would get in trouble with the boys for telling (or maybe because he thought he would also get in trouble with the teacher?).

What's your take?

Wednesday, April 18, 2012

Cub Scouts

So we started Aidan in Cub Scouts this year. We are a long line of Scouts in my family, including my Grandpa and my Dad. The den really seems to adapt to Aidan's oddities, although he's still trying to find his place in the group, and they sometimes bounce him around so they can sit next to their more familiar friends, but that's just little boys I suppose (the whines of "he took my chair..." get old regardless of the boy).  Aidan has already accomplished his Bobcat badge, is working hard on his Wolf badge, has earned the physical fitness and science belt loops and bridged with his Den last night over to Bear Cub.

Apparently Aidan LOVES Cub Scouts. Other than talking about Storm Chasing I've never really heard him plan for the future before (and this included Storm Chasing too). He told me on the way home that when he grows up he wants to have 2 sons and he will be a Scout leader in between storm chasing, and that he wants to give his son his wolf neckerchief and hat one day.

This summer they'll have camp outs and summer camp and it will be interesting to see him react to all of those. He's also having to learn to be less bossy, less competitive, and to work as a team and cooperate, all of which are skills he desperately needs to learn. So far I'm really glad we've put him into Scouts, especially after our conversation about the distant future today.

Monday, April 16, 2012

My Support Group - Thank You

People Who Make Raising a Child with Autism Easier on Me

  • My husband – When I met my husband, Aidan hadn't been diagnosed yet. He was a crazy child who wasn't potty trained, wasn't verbal, had meltdowns, and left me ragged and slightly insane. I'm not sure why or how he managed to stick around through Aidan's severe autism at the time and my untreated bipolar disorder, but somehow it happened. He stuck around through the poop-tastrophes and violent screaming fits, and supported me as I finally took Aidan to Vanderbilt to find out if our worries that he had autism were true. When the diagnosis was PDD-NOS (or high-functioning autism/atypical autism, as Dr. Warren explained it to us), Jeremy took it in stride, supporting me, helping me find the right place and treatment for Aidan in the aftermath of the diagnosis. He eventually allowed my son and I to move into his house with him, in spite of Aidan's penchant for destruction. When I decided that it would be best for Aidan if I quit my job so I could spend more time with him after school, Jeremy supported that decision and never looked back (or maybe he did, but he never really said anything). He's been beat up, kicked, scratched, screamed at, and even spent 2 sleepless nights at the hospital with Aidan and I when Aidan busted his head. Last November we were married. Jeremy still amazes me at how willing he is to be Aidan's daddy and how much he loves the kid and actually takes the time and effort to help Aidan grow and blossom into the best he can be. I know lots of autism moms who are nowhere near as lucky when it comes to their spouses. I'm glad I'm not one of them.

  • My parents – I'm one of those people who grew up with two sets of parents thanks to divorce. It was complicated and not always easy, but in the long run it was a great thing for Aidan because he gets more grandparents. My mom and stepdad are amazing with Aidan, keep him when they can, and are super supportive. Mom and Daddy went with me to Vanderbilt when we had Aidan diagnosed, and Mom has come with me to IEP meetings, doctor appointments, and who knows what else. My Dad and stepmom, Holly, come down as often as they can to spend time with Aidan – Dad even came down for Aidan's first Cub Scout Blue and Gold Banquet to see him get his Bobcat badge! None of them have ever questioned the choices I make for my son; they share new autism studies I might not have seen; they treat Aidan like he's just a normal little boy but accommodate his often frustrating needs without so much as a blink of an eye.

  • Aidan's autism unit teacher – Annie is amazing. Seriously. She took a kid who spent more days in the principal's office than in the actual classroom, and taught him how to be a student, how to learn in spite of his limitations, how to interact with his peers. Now he's able to spend all day in a mainstream classroom with no aid! It's so helpful to have a teacher who is in constant contact with me, and dreams just as big as I do for my child. With all the horror stories of people who've had to go into battle with their child's teachers at each IEP meeting, I'm grateful that we've only once had to do that.

  • Aidan's babysitter – We don't always get along. She may not always agree with how I handle Aidan's issues. But when it comes down to, Wendy has a gift. She was his babysitter for quite some time while I was still working, and even now keeps him pretty regularly. Somehow she just has a certain touch that makes Aidan want to act right and enjoy the world around him. She's not professionally trained to work with kids with special needs, but Aidan isn't the only special needs kid she's taken care of and she has a special touch with all of them. I'm grateful, even when she drives me crazy, that she loves my kid and helps him to be his best.

  • My best friend – How many times has this girl listened to me whine and moan and get all pissed off at whichever facet of the world has gone up against me or my son. She never judges, and she defends my choices and reminds me that I am, in fact, a good mom. Sometimes I need just that. And sometimes I just need to go get my nails done and get a drink – she's good for that too.

  • Aidan's pediatrician – Dr. Denny. He answers my questions honestly, doesn't look at me like I'm crazy when I ask questions about Aidan's weirdness, and has always made sure I was referred to the right place and people to get the right help for Aidan. He's the one who helped us get him speech therapy, the one who sent us up to Vanderbilt for Aidan's diagnosis. He makes sure he sets aside extra time for Aidan every time we have an appointment and asks lots of questions to make sure he understands everything about Aidan's progress or issues. He keeps himself educated and informed about the latest science and breakthroughs in the autism community. I hope everyone is as lucky to have a great doctor on their side.

  • The autism community – You guys are amazing!! I don't know what I'd do without my fellow autism moms and dads who commiserate, yell, cry, laugh, and question with me at all hours of the night and day. It's such a relief to be able to ask a question and have an answer from a dozen fellow parents. It inspires me to offer the same support and love to people in my position – because I know how it felt when Aidan first got diagnosed and I didn't know ANYONE who had a child on the spectrum and so I had no idea what was normal or what to do. I hope I can be the same support for all of you as you are for me.

Thank you to all of you. You're the best and you make my journey with Aidan through the world of autism so much easier and more fun. I hope all of you have as much support on your journeys as I do on mine.

Wednesday, March 28, 2012

First Visit to the Psychiatrist

Aside from being made to wait for freaking ever, Aidan's psychiatrist appointment went well. I felt that the doctor asked all the right questions both of myself and Aidan, that he didn't want to just automatically jump to medication, that he understands autism and how it affects Aidan, and that he was interested in engaging Aidan and helping him. He set us up with a therapist to help Aidan with anger management, impulse control, and social skills although he stated that he isn't sure how effective it will be. He feels that while Aidan is intellectually capable of understanding the things the therapist can share with him and help him with, Aidan's level of emotional maturity, and the developmental delays therein, can make it difficult for Aidan to actually carry those tools into practice.  He said that right now, although Aidan may intellectually be aware that A leads to B which leads to C, he may not have the maturity to realize those consequences and how they apply to HIS actions in the moment. That plus Aidan's lack of impulse control may make the therapy less effective, but worth trying nonetheless. As I said, the doctor acknowledged Aidan's delay of emotional development, but he said he didn't feel like it would be a long term problem. To quote him: "The difference between a 4 year old and an 8 year old, emotionally, is quite a lot, but the difference between a 22 year old and a 26 year old really isn't much at all."  I'm not sure if the age differences he chose were random or if that's how far behind he feels Aidan is. We know with other stuff like speech and toilet training and cognitive abilities he's always been a year or 2 behind, but I don't really have anything to gauge his emotional maturity by. 

Aidan's first therapy appointment is next Thursday, and then he returns to the psychiatrist at the end of June. We'll keep you posted!

Thursday, February 2, 2012

Introduction: A Thinking Person's Guide to Neurotypicals

A Guide to Neurotypicals -
For Those on the Autism Spectrum

Neurotypical: A term used by those on the Autism Spectrum to describe people who have typical neurological development and functionality.

There are hundreds if not thousands of books available to help “normal” people navigate and understand their family and friends who have Autism or Asperger's Syndrome. Neurotypicals know that people on the spectrum have issues with communication, social navigation, routine, sensory overload. When their child is diagnosed they're given guides and websites to try to help them understand. But what about those who are ON the spectrum? What are THEY given to help navigate a world that isn't made for them? How does a person with Asperger's or Autism understand a culture and language that isn't made for them? There are so many facets of neurotypical society that are just instinct for those who are “normal”. A neurotypical child learns body language and social mores simply by being a part of them. They learn how to lie and love and read faces and act “properly” with hardly any actual teaching.

The comparison has been made between a person with an Autism Spectrum Disorder and a person being dropped, with no warning or previous training, into a foreign culture. There is great frustration in learning not only the language but what certain gestures or expressions mean, social etiquette, things to avoid saying and doing that might offend or confuse. Add to that trying to understand what the locals are trying to convey who don't understand your language any better than you understand theirs. It can be maddening and overwhelming. The locals don't even notice the overwhelming sounds or smells of their city – they are accustomed to it and think that you, as a foreigner, are being melodramatic or even rude for commenting on your discomfort and asking for any adjustments to be made on your behalf. Their customs and traditions and humor are difficult to navigate at best and maddening at worst. But you have no choice. There is no option to leave. Some outsiders who enter this foreign land never do learn the language and are considered by the locals to be mentally deficient simply because they never did pick up the ability to communicate or understand the complicated traditions.

But more and more people are being diagnosed with an Autism Spectrum Disorder every day. The current statistic rests somewhere between 1 in 110 and 1 in 91. That's right around 1% of the population who is DIAGNOSED as having autism or Asperger's. This isn't including all those who are borderline, or whose parents didn't have the money, means, or awareness to take them to someone who could diagnose them. The numbers are steadily rising, and since we have no idea what causes it, the numbers will probably continue to increase. Not that it's necessarily a bad thing, so long as neurotypicals and those on the spectrum can learn to communicate. Obviously the next step is to provide a sort of road-map to the neurotypical world for those on the spectrum.

My plan, eventually, is to turn this into an in depth book that is easily accessible whether or not a person has internet readily available. For now though, I am going to kick off a condensed version here on my blog. I ENCOURAGE and ASK for lots of questions and input from my Aspies and Auties out there!  Stay tuned as I push out what is hopefully some great information for those on the spectrum to function in a world too stubborn to accommodate them!

The topics I plan to cover are:
  • Herd of Humans (inability to be alone, social hierarchy, tradition, ritual, bullying),
  • Talking Without Words (non-verbal communication via body language, facial expression, and voice tone),
  • Nevermind what I say, you know what I mean (lying, figurative language, hyperbole, sarcasm),
  • Emotional vs Logical Beings (flighty, irrational, emotional, lack of focus)

Tuesday, January 10, 2012

Aidan's first semester of 1st Grade

Aidan got AB honor roll last semester! He receives an award for it tomorrow. His weak spots are Reading and English, as well as some obvious behavioral issues.

He also had a STAR reading test, which is skewed by his receptivity to computer based testing of course. His Grade Equivalent for reading is 1.3 (so the first half of first grade), he's right in the average range with students his grade.  His instructional reading level is still at the Pre-Primer level, but he's working on improving.

We also got the Annual Goal Progress report for his IEP. He's got a 2 in both progress and extent on both of his major goals (staying on task without interrupting or talking back, and tying his shoes).

Of course, we're VERY proud!

Other fun things - Aidan gets to earn a free pizza this month if he reads 15 books. He says he's going to read 16, but that we have to go buy more Magic Treehouse books for him. Also, between now and April he has to do his first science project. His will just have to be a poster explaining or showing his project. Hopefully he doesn't get too overwhelmed. I'm thinking weather (duh) will be the topic. I'll leave it up to him.