My Summer So Far

I’ve been totally slammed and feel like I’ve barely been keeping my head above water. Anything non-essential has slipped away from me. Here’s what we’ve been up to, if there’s anything you want more detail on, let me know and I’ll try to carve out enough time for a full post.

– End of year IEP. G is transitioning to the intermediate school (4-6 grade) so we asked the principal of that school to attend our meeting. Due to budget cuts they were considering going from 4 teachers in G’s grade to 3. We requested a full time aide for G in that scenario. Which we did not get, but we did get two hours of floating aide time each day to help during whatever times were hardest for G. We also got input into teacher selection, so DH and I spent an hour in two classrooms observing. We picked the most experienced teacher of the two because of her very structured and quiet teaching style.

– I substitute taught a handful of times at the end of the year. Twice as the para for a more severely affected autistic child than G. It was an enlightening experience. A lot of the skills I’ve developed raising G transferred over but I also learned a lot about what I don’t know.

– At the end of the year, the intermediate school principal felt confident that the board would approve hiring on an additional teacher for G’s grade. I was asked to sit in on the interview committee. The next day, the board did approve the position. Now G has a small class size *and* floating aide hours. Score!!

– DH and I spent a week in Vegas while G spent a week on vacation with my mother. Heaven.

– G started his first week of summer camp. This year, the camp is working with the National Inclusion Project to better include kids with disabilities. G had an aide from the adaptive sports program accompany him the whole week, paid for by the inclusion grant. The aide even accompanied him on the overnight camp out. It was a horse riding camp and G learned that he loves horses.

– We had one week with no activities scheduled. We quickly spiraled into endless arguing and meltdowns. We created a new token board system with three tokens per electronic device. G can lose tokens as warnings, and when a category is empty, he’s lost that particular device and has to earn all three tokens back with kind and cooperative behavior.

– Started swimming lessons, which have been rocky but overall are going well.

– I’ve started a hiking regimen where I get out at least three times a week by myself. Without a little self-care, I was going to lose it.

– I went to dinner with a girlfriend and tried to explain all of these events and how I felt about them. She asked if I’d ever considered talking to a professional. I’m sure it’s a valid suggestion, but I left feeling whiny and crazy.

So how are you surviving your summers?

Published in: on July 3, 2011 at 12:39 pm  Leave a Comment  

Meeting Dr. Grandin

Temple Grandin is coming to our community to speak about Autism.  Tonight.  We’re bringing G to see her speak.  I’m wildly excited and very anxious to make this a wonderful experience for G.  You see, when we decided to explain autism to G, we made a decision to emphasize the positive aspects wherever possible.  To that end, one of the books we used to introduce and explain the concept of autism was Different Like Me:  My Book of Autism Heroes.  It discusses successful historical figures who if they were born today may have been diagnosed with autism, and talks about how their focus on their particular special interest was a source of professional success.

One page in the book is devoted to Temple Grandin so G is really looking forward to seeing her.  My concern is having the evening backfire on us.  I don’t see my active 7 year old sitting quietly for a speaker like this.  It’s also rather late in the evening for G.  The talk begins at 5:30 followed by a book signing where we hope to get her to sign her page in our book for G.  G’s current routine is dinner at 5:00, bathtime at 6:30, reading time at 7:00 and bedtime at 8:00.  Sometimes he can be flexible for a special event – but then other times he absolutely cannot.  And I’ve never been able to predict his reaction.

My hopes are way too high.  In a perfect scenario, Dr. Grandin would deliver an inspirational talk targeted directly to my son that would reinforce the message of autism we’ve crafted at home.  They’d meet after the discussion, have a wonderful moment and G would find an autistic adult he could look up to for the rest of his life.  No problem, right?

Realizing how irrational my hopes are, DH and I have a plan we’ve calmly gone over with G, stuffing all our excitement and worry deep so G won’t pick up on it.  We’re going to bring G home from school, have an early dinner and head back to the auditorium.  We’ll put coats on seats at the end of a row near the door so we can easily leave and come back as G needs breaks.  While we wait for the talk to begin, we’ll have G outside running off as much energy as possible.  We’ll have his ipad and nintendo DS at the ready with headphones so he can still hear his games.  We’ll have a bag of snacks, drink boxes and gum.  Worst case, DH and I are mentally prepared to leave whenever G is ready to go.  We may drive two cars so one of us can stay to have the book signed for G, so he isn’t disappointed in a week when he realizes what he missed by leaving.

The next two days are going to be huge.  There is the lecture tonight, a parent/teacher discussion group with Dr Grandin tomorrow morning and G’s IEP meeting in the afternoon where we discuss his transition to the intermediate school.  Wish us luck!!

Published in: on May 2, 2011 at 11:28 am  Comments (2)  

We Survived Disney!

Even after our difficult trip to Florida last year, which I touch on here, we went back.  Mostly  because that’s where my inlaws live.  But also to take G back to Disney.  This year we did things differently.  We had a highly structured plan for which parks we were going to visit on what day, although we prepared G for changes due to weather.  We created an excel spreadsheet showing G visually what he would be doing.  I’m going to try to insert it here, lets see how it goes:

(note the nana night and nana day – DH and I escaped for a night in a hotel!)

We also printed maps of each park and put everything into a folder and named it the “Folder of Fun.”  Each night G would check the schedule, select the appropriate map and study for the next day’s adventure.  When we went to Aquatica (Seaworld’s water park) he knew where every ride was and the order he wanted to see them.  We just followed his lead and inserted snack/lunch breaks.  It was pretty incredible!

The first day of our theme park adventure had us going to Epcot in the afternoon so we’d be there in time for dinner at one of the country themed restaurants.  Upon entering the park, we headed straight for Guest Services.  I had G sit on a bench with DH and my inlaws while I went to the desk.  I didn’t know G had decided not to sit but to follow me, until I let the lady behind the desk know that we were visiting with a child who had autism and suddenly heard a proud voice say, “Yes.  And *I* am the person with autism!”  The woman told G she was happy he was here to see the Disney parks in a very respectful and dignified way.  It was such an incredible exchange, I almost cried.  We quickly got a red card to carry around the park and we were on our way.

The red card was magical.  If we had gotten one last year, I think our major meltdown could have been avoided.  The card helped us find shorter lines by using the disability access points and even more importantly, the disability lines were quieter.  When there was a fast pass system, we used the card to access the fastpass return line.  Which was difficult but do-able – we’d hand G his ipod so he could sink into a game and we’d herd him along whenever the line moved.  It was very similar to our Olympic experience where we found using the disability security checks and shuttles extended G’s tolerance for crowds and waits to almost typical kid levels.  (not quite, but damn close)   G was able to see and ride enough to feel like he was getting a great Disney experience and we were able to keep his emotional temperature in the manageable range. 

Aquatica and Seaworld do not have such an extensive and helpful system for people with disabilities.  But their parks were much less crowded and chaotic, so it evened out in the end.  At Aquatica, we paid extra to rent a deluxe cabana.  It was in a quieter corner of the park and came with a fridge full of water.  We brought our lunch and snacks there instead of eating in loud restaurants to get quiet breaks in the shade.  Those breaks gave G the ability to recharge enough that he was able to tolerate waiting in lines for the rides.  And the lines were never very long to begin with, so it worked great.

The last thing we did was limit our time in the parks.  Instead of going with the typical persons attitude of staying all day and hitting every ride, we got there at park open and never stayed past 2pm.  That was more than enough time for us to see plenty without taxing G beyond his limits.  We rented a house in Kissimmee with a small pool in the backyard instead of staying in a hotel which gave us the ability to create a quiet bubble for G when needed.  G has always been a water baby – even before we knew he was autistic we’d figured out that baths were soothing for him and would often spend entire afternoons watching him play in the tub.  So the pool was an excellent way to calm down and recharge in the afternoon after our mornings in the park.

All in all, I’d say we not only survived Disney, we conquered Disney!

Published in: on April 13, 2011 at 1:41 pm  Comments (2)  

Friendship: A Two Way Street

I recently described how heartbroken I was for G when his best friend exercised his right to take a break from G and play with other kids at recess.  I worried that G wouldn’t truly understand that they were still friends, that G would feel rejected and less-than. 

Then I heard the most amazing story from G’s teacher.

G has taken BF (best friend) to his social skill sessions with the school psychologist every week for the last two years.  They also have lunch with her on this day, a special treat that they both really look forward too.  Yesterday, G invited DQ (Drama Queen, who wrote me a lovely thank you note for borrowing our Asperger’s book, I’m waiting to see how that plays out) but did *not* invite BF.  BF was stunned and while G was gone he asked their teacher if he had done something to make G mad at him.  When G returned to the classroom, she pulled the two boys to the side to talk because, “friends need to communicate with each other.” 

BF asked G what he had done to make G mad and why G hadn’t taken him to Miss L’s.  G told BF that BF had done nothing wrong, he just needed a break.  His teacher told me how he said, “Just like you sometimes need a break, sometimes I need a break.  It doesn’t mean we aren’t still friends, just that we’re also friends with other people.”  Then there was a pause before he said, “But my break wasn’t as long as your break.”

For all my angst and worry, G not only learned this friendship lesson, he flipped it and taught a valuable lesson to his neurotypical peer.  I’m so proud of him!

Published in: on March 25, 2011 at 9:57 am  Comments (3)  

Friendship and Drama Queens

Boy, Friendship is an extraordinarily complex topic to teach.  Especially when the potential friend also has issues with social skills.  Without a solid example to use, it quickly becomes a quagmire of conditional rules with multiple exceptions.  “If A, then B unless B involves C, then D…”

We met with G’s teachers after school to introduce his new ipad and go over rules of use.  (ie, no games unless authorized)  As I waited for the students to leave the classroom, his teacher popped her head out, holding our copy of the book, Can I Tell You About Asperger Syndrome:  A Guide for Friends and Family.  She asked if she could send it home with a female classmate for the weekend.  When I said yes, she turned to the girl and told her to read it with her mother over the weekend and told her they would talk about it more on Monday.

I was instantly on guard, wondering what was going on and what I had just opened G up to by agreeing to send the book home.  We had our meeting about the ipad and after all the other teachers had left, DH took over, sending G into the hall with his headphones and ipod so we could talk privately, and he started asking what was going on with the book and the girl.  I have to say, it is always awesome when DH takes the lead like this.  Schools always take Dad’s seriously.

His teacher started to hedge a bit, saying the girl wanted to know how to be a better friend to G.  But we know G has had issues with this particular student before.  For example, the teacher has a system where if conflicts between students cannot be resolved then one of the students can write a note in the class meeting book.  At the next class meeting both parties present their side of the conflict and the class works as a team to find an equitable resolution.  It’s a great system, but this girl loves the attention at these meetings and writes about G in the book for the tiniest things.  G doesn’t even know there’s a problem before it gets brought up in front of the class and between the surprise and the attention, he has a really hard time staying calm.  I was incredibly proud of him a month ago when he expressed himself at a meeting and said he thought the girl should stop writing about him in the book and talk to him first.  The teacher agreed and now she is not to write about G without discussing it with the teacher.  Whenever I see this girl, she gushes over how much she loves having G in the class and being a friend to G.  But it feels more self-righteous than genuine, as if she’s pointing out what a great person she is for being a friend to someone like G.

With DH leading the discussion, the teacher let us know that the girl wrote a note for the confidential comment box saying she is having a hard time knowing how to be a friend to G.  But the teacher also told us that she is aware of the girl is using G to draw attention to herself, that the girl has great difficulty making friendship connections of her own because she is constantly drama seeking and G is really her only friend in class.  I got the feeling this has been discussed with the girls parents before.  I also got the feeling she sent the book home to have it read with the parents as a way to really force the issue with the family.

I know this issue is the girl’s, not G’s.  The girl needs help with her social skills, needs to learn how to be a good friend to a peer just as G does.  But I can’t help but feel defensive and resentful.  It raises every protective instinct I have – I want to tell this girl to stay away from my boy.  I also know my instincts are counter-productive and hypocritical.  If I want G’s peers to give him the benefit of the doubt while he learns social and friendship skills, then I have to extend the same tolerance to other students.  The teacher’s plan is the proper way to handle this situation.  Having the girl learn about autism with her parents is a good thing.  Parent’s of neurotypical children often have a, ‘kids will be kids’ type of attitude.  Maybe this particular situation will force them to deal with their own situation in a way it seems they haven’t in the past.

As much as I want G to learn the skills to develop and sustain friendships, because he likes kids and wants to have friends, the process is turning out to be extremely difficult.  For me, that is.  😉

**I worry about discussing issues with G’s classmates on this blog because of privacy concerns.  No matter how anonymous I try to make this blog, true anonymity on the internet is unrealistic.  I really need to get my thoughts in order on this subject but may end up making this post private to protect the student involved.**

Published in: on March 19, 2011 at 10:58 am  Leave a Comment  

More Lessons in Friendship

Operation Friendship went into effect last week.  G invited another boy to join him and his best friend at his weekly social skill practice.  While G and the new boy were occupied with an activity, Miss L pulled the best friend aside to let him know that if he was feeling overwhelmed or needed a break that he could express that to her.  The best friend (I’ll call him BF)  told her that he loved playing with G and was doing fine.  But they still put a plan in place where if BF felt he needed a break he could put a note in their teacher’s confidential comment box.

On Friday, BF felt he needed that break and put the note into the comment box.  G’s teacher got another boy, E,  excited about playing with G at recess pulled G aside to let him know what was going on.  Tears welled up in G’s eyes but he reportedly held it together well.  She started to coach him on the idea that he and BF were still friends when G cut her off, saying he knew all that because his mom explained it to him.  She asked him to tell her what we’d talked about and he repeated all the ‘rules of friendship’ in a typically scripted fashion.  Which means the words sunk in, but putting those rules into practice was emotional.

E let G pick their recess activity and they played really well together – morning recess was a success!  But at lunch recess, the teacher forgot to put as much time into prepping G, understandably assuming that he would still have their earlier conversation in his head.  At lunch recess, G told his playground aide that he knew BF wanted to play with other boys but that was ok because G wanted to play with those other boys too.  Rather clever manipulation on G’s part.  It took some discussion to make G understand what giving your friends a break really entails and was again very frustrating and emotional for G.

My heart is breaking for G.  It was such a monumental moment when he formed this close friendship with BF.  Watching him learn these hard lessons about relationships is bittersweet.  I know it is wonderful that he has the capacity to learn these things and it is important to teach it this way vs letting him smother BF until their friendship is damaged.  But it is so hard to watch him struggle with this.  I just want to hug him and cry with him.  It’s also a little scary because while I know we’re doing everything we can to teach these lessons in a proactive fashion, there’s no guarantee that it is going to work.  G has such a strong desire to be social but there is the very real possibility that G will suffocate this friendship and then be in a spot where he has no friends again.  We’re in a position where we can teach what we can and support where we can, but the outcome is completely up to G.

Published in: on March 14, 2011 at 9:37 am  Comments (1)  

Friendships

G is having difficulty navigating the tricky world of friendships.  He sees the school psychologist with a neurotypical peer once a week to work on social skills and has developed a close friendship with this boy.  The trouble is, G is starting to suffocate the boy.  I witnessed it myself, I went to G’s class to participate in reading time to honor Dr. Seuss’ birthday.  There was 15 minutes of silent reading and then 15 minutes of reading to someone else.  The kids were told to pick partners and G got up, walked over to the boy, stood way too close to the boy and wouldn’t move away until the boy acknowledged G and agreed to be his partner.  During this time, G refused to talk with me or be my partner – he was focused like a laser on his friend.  Later that same day, G had a meltdown in PE because the boy would not agree to be his partner in an activity.

At our trimester conference this week, I brought up the topic of G’s friendship with the boy.  The adults all agreed that while the boy really likes G and they have fun together, G is starting to exhaust the boy.   So we came up with a plan to introduce a third boy to the weekly social skill lessons.  The teacher recommended three students she thinks would be a good fit and will ask if they are interested.  Last night, I laid the groundwork by notifying G that starting next week, he would need to take the boy and one of the three to see Miss L and further suggested that all four boys would start taking turns in the future.  He informed me that he didn’t need to take anyone else, he only needed the boy. 

We began a minor dominance struggle where I started to tell him to either take two boys or no boys to see Miss L.  But something stopped me.  I decided that being honest about the reasons might be the way to go.  So we sat down and I quietly spoke to him about Asperger Syndrome, explaining that for him, it meant understanding the unwritten rules of friendship is difficult.  I explained that the boy really likes being G’s friend, but likes having other friends too.  I talked about how everybody needs a break sometimes and used DH and myself as an example, telling him that we are best friends but sometimes need to be with other people or to be alone.  G disagreed, saying he only needed to be with the boy but conceded the point that he has trouble with understanding friendships and behavior.  I got him to agree to trust me to tell him what those rules are for now.  And then he agreed to invite a third to his meetings with Miss L, selecting one of the recommended students. 

This situation makes me feel very anxious.  G has a strong desire to socialize and play with peers and will notice if he’s left out or shunned.  We’re working very hard to make sure that doesn’t happen by teaching him what we can and fostering understanding in his classmates.  But there are limits to what we can do as adults.  I’m worried we’re reaching that point where the other kids give up on G because it is too difficult and awkward for them.  I’m holding my breath, hoping this new plan of introducing new boys and letting the original boy take a break will work.

Published in: on March 3, 2011 at 10:27 am  Comments (2)  

IPads for Asperger’s

We’re looking to get G an Ipad because it was recommended by our school’s autism consultant.  The theory being that if we can get him comfortable with using it now, it will make typing notes and organizing his work in the future much easier.  We had friends in town with an ipad and he absolutely loved it – for playing games.  I got him to type some quick messages but he wasn’t motivated.  He desperately wants an ipad though, so I got him to understand we wouldn’t be purchasing one unless it was used primarily for school.  (that almost broke my husband’s heart, he wants one as badly as G)

Before making such a major purchase, I started looking into apps that would be appropriate for G and quickly became overwhelmed.  I’m looking for some that will help him organize himself, type work at school and practice math facts.  He doesn’t need it for facilitating communication, although perhaps an app to help him identify or practice expressing emotions would be nice.  An app for his daily schedule would be great.  He seems to be in that middle area where some apps are too sophisticated and others not sophisticated enough. 

Then I wonder about keyboard accessories and protective cases and realize this ‘simple’ idea is becoming more complex by the minute.  Anyone been through this and have any advice?  My husband is ready to pull the trigger as soon as the ipad2 announcement, hoping that means the original ipad prices drop.

Published in: on March 1, 2011 at 9:33 pm  Leave a Comment  

Remembering to Relax

I’m a hardass.  I admit it.  Like so many autism parents, since G’s diagnosis I’ve taken it upon myself to teach him the skills I think he’ll need to live the life of his choosing.  I never miss an opportunity to teach social skills or independent living skills.  I’m constantly thinking years into the future to identify potential issues and to break those issues into small steps that I can begin to teach right now.  I’m also the parent who disciplines the most.  DH tends to be the fun, game playing, friend-parent while I tend to be the parent who makes and upholds the rules.  In general, it works for us.  But sometimes, I need to be reminded to relax and have fun with my son.

DH was sitting out of sight in the dining room with his laptop when G wandered through the house asking me to help him find dad.  I agreed to help but also asked if there was anything I could do for him.  He said no, he wanted to ask dad to play with him.  I replied that I could play a game with him too.  Then he said, “No thanks.  I want to play with dad because he likes me more.”  Shocked, I asked what made him think that.  He said, “He doesn’t yell at me as much.”  (just a note, part of G’s autism is to exaggerate to the extreme.  Anyone who corrects G in any way is ‘yelling’ at him.)

It sent me into an emotional tailspin.  I began analyzing every interaction with G, second and third guessing every time I felt I needed to remind him of the rules or correct him.  It was not a fun week for me, I felt like I was the mother from hell and was emotionally traumatizing my child.

Today is the first day of the state assessment testing for third graders.  It’s no big deal to us, so while they’ve been practicing in class, we haven’t addressed it at home at all.  Still, G was very anxious about it last night.  After going to bed, he came out and asked me if I felt stressed.  I said no but realizing he was trying to tell me something, I asked if he felt stressed.  He replied, “Yes, I am very, very stressed.”  How fantastic that he was able to express a complex emotion!! 

I offered to rub his back to help him fall asleep and followed him back to his room.  I sat there for maybe 5 minutes, rubbing slowly and was able to feel the tension easing from his body when he sleepily said, “Sometimes, you’re a little mean.  But sometimes, you’re a little nice too.”  I held in my tears until I left his room.

I think overall I’m basically on the right track and am doing a good job.  But I’m constantly looking to the future and am trying not to miss a teachable moment.  Even when I’m playing with G, I’m focused on taking turns, being a good winner or loser, etc.  The lesson I’ve learned is to remember to live in the present and enjoy the moment right in front of me.  I think it is so common for autism parents to worry about therapy, social skills, the future in general, that we forget to simply enjoy our kids.  It’s something I’ll be sure to do as we move forward.

Published in: on February 23, 2011 at 12:00 pm  Comments (2)  

Progress: A Double Edged Sword

For the last several years I’ve been working hard to help G learn to figure things out on his own.   Every time I ask him to do something, I give a detailed explanation to explain my thought process and the logic behind the request.  It’s an extreme version of what parents of typical kids do with their toddlers in an effort to gain compliance and head off tantrums.

I’m starting to see progress, but it’s backfiring in ways I didn’t anticipate.  Now when I ask him to do something and explain why, he evaluates my reasons and decides if he agrees or disagrees with them before cooperating.  It’s very exciting – and very maddening because his logic isn’t fully mature. 

For example, last week I picked him up from school and told him to put on his coat.  He asked why and I explained that it was cold outside and he needed his coat.  His teacher asked if she could speak with me a minute so I told G to head to the playground for his regular after school play time and I would meet him there.  (he walks slowly so by the time I was done he would have only been on the playground for 2 minutes at most and there are other parents with their kids to watch things)  When I got outside, I saw his coat hanging on the fence.  G told me he disagreed with me about it being cold so he decided he did not need to wear his coat.  I had to explain to him that he has a documented inability to feel cold like other people, but his body was still losing heat similar to other people.  And as it was currently 19 degrees, wearing a coat was mandatory!

Then there are the less-dangerous, more irritatingly frustrating situations.  He likes to drink OJ diluted with water and ice for breakfast in the morning.  Today he filled his cup half full of juice and turned to the ice dispenser in the fridge.  I stopped him and told him to use his hands to collect the ice because if he used his juice glass the juice would splash over the sides and would make everything sticky.  He paused for a moment, I could actually see his brain processing that information, before he turned back to the fridge with his glass.  I stopped him again and used a sharper tone as I said, “G, I just told you not to use your glass to collect the ice.”  He replied, “I decided you were wrong, the juice won’t splash high enough to get out of the glass.”

Maybe he’s right.  (Although I really don’t think so.)  But the fact that he disregards me and goes about his business is driving me nuts!  I have serious control issues, I know this and I’m working hard to overcome them.  I’ve always been The Mom – the one who knows everything about their child and how to most efficiently do whats best for them.  This early rebellion is not something I expected, even though I’ve been actively working to teach G how to make decisions on his own.  I’m taking lots of deep breaths and reminding myself that I’m thrilled to see this kind of progress.  And I am – even though the short term might drive me insane, the long term ramifications are truly wonderful.

Meanwhile, DH is standing back and laughing at the both of us.  Because this new behavior of G’s – this confidence that his way is the right way – that’s absolutely me.

Published in: on February 5, 2011 at 11:21 am  Comments (2)