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.

20 Exclusion no-no's for teachers with autistic students in their mainstream classroom:

School is starting back! For the kids this can be an exciting time, but if your child has autism both you and he could be a bit worried about what's to come this year - especially if your child is moving into a mainstream classroom! Aidan's going to be in first grade this year, starting out with an aide with him in the mainstream classroom all day.

Here are twenty "obvious" rules for the mainstream teachers out there:

1. Try not to use metaphors or sarcasm - “it's a piece of cake,” or “let's put our thinking caps on” are things don't make sense to me and it will take you a while to explain. Sarcasm is even harder to understand!
2. Don't make jokes about clumsiness or difficulty speaking, even with the neurotypical children – it can make me even more self-conscious.
3. Don't dismiss me as having nothing to say or refusing to participate or not paying attention just because I don't speak up.
4. Don't give long strings of verbal instructions. Offer one step at a time and make sure to give me written or visual instructions or rules no matter how “simple” the instructions may be.
5. Don't assume that because I refuse to look you in the eye that I have an attitude or am lying about something. Make sure neurotypical students understand this about their autistic peers. Don't force a child to make eye-contact!
6. Don't assume that I will understand the gist of your rules or be able to apply them in a different way to other situations. I think of rules as literal, to be specifically followed to the letter in the situation in which they were presented. Generalizations are often useless to a child with autism.
7. Try not to plan class parties or field trips in situations that are loud or noisy.
8. Don't focus on a my disabilities, focus on my abilities. Don't use words like “weird” or “strange” or “bizarre” to describe children or their appearance or behaviors whether they are neurotypical or not.
9. Don't make changes in the schedule or expect me to react calmly to changes in the day that happen without warning. If there are unanticipated changes, don't reprimand me if I do react negatively.
10. Don't judge a me or reprimand me for choosing to communicate with you or my classmates in a way that is not speaking out loud – for example writing notes or drawing pictures.
11. Do not rush me or speak over a me if I'm struggling to verbalize something. Give me time to put my thoughts together and don't try to speak FOR me unless I look for help. Don't assume it's not important if I'm not able to verbalize it.
12. Don't punish me for being truthful! Sometimes a child with autism will say something that is painfully true (Joey smells bad, Ms. Smith's hair looks funny, etc). Also don't punish me for speaking up when I feel something is wrong or I have reached my limit.
13. Make sure my classmates and I have a trusted person we can go to if we need to bring up a problem we are having with fellow students or even our teacher (this is the first step in stopping bullying!)
14. Don't point out the strange behaviors I may exhibit while upset or distracted.
15. Don't fill every inch of wall space with pictures or every quiet moment with music – every poster, scrape of a chair, squeak of the chalk/marker is one more thing for me to focus on instead of my work.
16. Don't become impatient with me for not reacting or responding immediately after you give instructions or ask a question - give me a little bit of extra time for absorbing what you said.
17. Don't assume that certain ways of acting or speaking are “common sense”. Children with autism have to LEARN things that come naturally to most people.
18. Don't offer open ended choices (What do you want to eat?) - instead offer closed-ended choices (Would you rather have a hot dog today or chicken nuggets?)
19. Don't JUST send a note home if I have a meltdown or hit another child and definitely don't WAIT to make sure my mom and dad know! Call that day and explain exactly what happened to my parents. Notes just don't give enough information and aren't urgent enough.
20. Don't move from one activity in the day's schedule into another without some clear transition. Tell me how long until the next activity, what the activity is, and what is expected of my classmates and me during the activity.
    
    
    These are the rules I've got so far with help from the web and Twitter (I'm @thepyxie if you want to follow!). What do you have to add?  Feel free to print these out and hand them over to your child's teacher along with your phone number and email address so you know you can always stay in touch.

Aidan moves to a new school... or, why first year kindergarten teachers shouldn't have autistic children in their classroom...r

It's been an excruciating and stressful process, which has taken nearly a month (maybe more) to straighten out, but Aidan is now happily ensconced at his new school. Let's hope this time is more successful.

Because I registered Aidan late at Creekside Elementary (here in Limestone County), he was placed in a classroom with a FIRST YEAR TEACHER. Okay, seriously, who is this fair to? Aidan did alright at first, he made lots of friends, and came home singing songs and did his work. He adored his special ed teacher, Ms. Matsos (thank God for her, or things would have been a million times worse!), but she could only spend so much time with him, since she's got a lot of other students to tend to.

Aidan has a lot of issues with sensory overload, and I made sure that his kindergarten teacher (Ms. Hayes), Ms. Matsos, and the principal (Mr. Scott) all knew about these issues. Sounds are really his weakness, and he has to put a lot of effort into ignoring all the little noises you and I are able to filter out with no issue. I know some smells bother him, and he hasn't really told me about whether certain lights bother him, but who knows. We send his iPod to school with him everyday in case he needs time out and some different sensory input, and you'd think Ms. Hayes would learn pretty quickly when Aidan needs a chance to escape.

A couple weeks into school, they started DIBELS testing. This is basic reading skills competency for kindergartners. Aidan had been doing fine up until this point, with really very few problems. As far as I can guess, this change of schedule and routine really threw him off and the problems started.

Now anyone who's been around Aidan a lot, knows that when he's trying to ignore the world around him and focus on the task at hand (school work, TV, playing with trains, Lego's, etc.), if you touch him or speak to him, he lashes out. He just has a hard time with the sensory input. At school there are even more noises to try to filter out, and even more to focus on. Of course, kindergartners aren't great at staying out of personal space, or leaving other kids alone, and they all sit at group tables together. What does this mean for Aidan? It means that he starts hitting kids or pulling their hair or whatever reaction he feels is necessary when they break his focus or he goes into sensory overload. He had been having problems with pickup in the afternoon because it was too loud, and we changed that situation, but you can't exactly pull a kid out of the classroom every time he gets overwhelmed.

At least twice a week I was being called by the principal, or having to go the Principal's office to pick Aidan up because he had hit another student, or worse had hit his teacher. Kindergarten children should not be spending the day in ISS (in school suspension). But Aidan realized that the office was quiet, and there weren't other students there to invade his space or make irritating noises. So he continued acting out, because for him that wasn't a punishment. And it felt wrong to punish him for reacting the only way he knew how to a highly uncomfortable situation - he just doesn't have the coping skills to deal with it any other way.

Finally, Mr. Scott (the principal at Creekside) recommended that we consider placing Aidan at a different school that could better provide for his needs as a child with autism. Johnson Elementary, which is about the same distance from our house, just in a different direction, has a self-contained autism unit, with several aides to help the children one-on-one, and one of the best autism teachers in the state.

What an opportunity!

We were hesitant at first. Aidan is super-smart (highest reading level in his kindergarten class!), and very high-functioning - would these kids who were much lower-functioning make it harder for him to progress? Would he be overwhelmed by their behavior? If we didn't move him, what could we do for him?

Fortunately, Limestone County spent the majority of their stimulus money on their autism programs. In fact, they have a nationally renowned behaviorist from Auburn on retainer for the year - Dr. Babcock. He's odd, but he's very intuitive and has been working with autistic children for a very long time. We had the chance to sit down with him, as well as two of the special ed coordinators from the school board, and the autism teacher at Johnson (Ms. Enloe, who is amazing). Dr. Babcock also went over and spoke to Ms. Matsos about Aidan, and also observed him for a little while to get an idea of Aidan's behavior. Apparently, it is very rare for Dr. Babcock to recommend for a child to go to the autism unit, but he told us without a doubt that this was where Aidan belonged (heck, we asked God for a clear direction, I guess he thought he'd better make it crystal clear!). He feared that if we didn't move Aidan, he would develop a school phobia - he didn't want Aidan to feel like he had to act out to escape the discomfort of the regular classroom.

So, I took Aidan the next day to visit the classroom, with the hopes that if he liked it, we could get him enrolled the following Monday. This was the plan, and I was told by the special ed coordinator that it was clear for us to do this. We were delayed by a week because Ms. Enloe was going to be out on training, but when she returned then we'd start Aidan there and have his IEP meeting on his first day.

This is where the tangled mess that had me so stressed out really got even messier. Jeremy and I showed up Monday morning with Aidan who they took to the classroom. Ms. Matsos, Ms. Enloe, Dr. Lewis (Johnson's principal - who I don't like), and Ms. Simmons (a kindergarten teacher at Johnson) met with us. Instead of coming up with an IEP, they (Dr. Lewis and Ms. Enloe, but mostly Dr. Lewis) started back-pedaling. Oh, we didn't know about any of this, we don't have enough info to do an IEP, we don't know enough about his behavior, we didn't know this decision was final, are we sure he should be at Johnson, I thought Dr. Babcock was supposed to make a behavior plan first, that meeting wasn't official, let's step back and think about this. I went into mama bear mode. I was ready to slash some throats and take some heads. We left that day without accomplishing anything. They said he could stay the rest of that day, but should return to Creekside until further notice. The principal would attempt to contact the special ed coordinator. We had to wait until Friday after next to hear from Dr. Babcock. Who cares if we're shoving an already miserable little boy back into an uncomfortable and unproductive environment? It's convenient for us.

Thank goodness Ms. Matsos told Mr. Scott. About an hour after the disastrous meeting, my cell phone rang and it was Ms. Baccus (the special ed coordinator). She said Mr. Scott had called her and said the meeting hadn't gone well. I told her what had happened, and she confirmed that it was not THEIR decision to make, and that the decision had already been made and emails had been sent two weeks before. She said not to get upset because it would be taken care of. She called me back again and said we could go ahead and transfer Aidan from Creekside to Johnson, that he would finish out the week at Johnson, and on Thursday we'd have the IEP meeting, and she would be there to ensure that things were done properly and Aidan wasn't shuffled to the side again for the sake of bureaucracy.

So Aidan started his second week at Johnson yesterday. They've been working on handwriting, and numbers, and when he behaves for a certain amount of time he gets to go the sensory integration room. He calls it the nursery room for some reason - he loves it. It has quiet music, and dim lighting, and all kinds of interesting toys like a ball pit and a tent, and eventually a swing. He seems so much happier.

Right now they're observing his behavior, and letting him acclimate to the new school and environment. He's getting used to the new schedule and people, and then once they've gotten to know him, he'll start spending time in the regular kindergarten classroom, with an aide. Eventually, he'll spend the majority of his day in there with an aide. The plan is that next year he'll be back at Creekside and we'll try the whole kindergarten thing again. Considering he's got the maturity of a 4 year old right now, then next year he should fit right in. And you can be sure, I won't allow them to place him with an inexperienced teacher again.