Self-Advocating

We had friends from our old town come visit us for the weekend because our town had a music festival. They have two children, one G’s age and one about 5 years younger. They come up a few weekends each winter for skiing so the kids are used to each other and generally get along well. I volunteered to watch the kids on Saturday so the adults could go take in some concerts and watched them all play together nicely, even doing some great imaginary play. That evening, we had a babysitter come in so we could all catch the nights headliner and go to dinner.

The next day, our friends returned the babysitting favor so the hubs and I could go to lunch. DH and I were in the car, backing out of the garage, when the door to the house flew open. G stood there, shoes on, jacket in hand, trying to get our attention. We stopped and rolled down the window, and G demanded to come with us. We explained that he was staying to play with his friends but he was insistent that he was coming with us.

We were perplexed. G had never, ever gone through the separation anxiety phase so we had no idea what to do. I tried being firm and telling him he was staying and we were leaving. We tried reminding him of all the fun activities planned. Our friends tried to cajole him into staying with them. Nothing worked. I took him back to his room for privacy and tried to talk with him. All he would say is, “I just want to be with you,” in the most pitiful tone of voice.

DH took him back to his room to talk with him and had more luck. Apparently, G was overstimulated from all the socializing and needed a break. As soon as we realized this, we changed our plans. G came with us to lunch and our friends went to lunch on their own. As soon as we told him what we’d decided, he broke down. He started crying and saying, “Thank you – thank you so much for listening to me.” It made me want to squeeze the stuffing out of him!

It was as if the stress trying to get us to understand what he needed kept him from being to express himself effectively. Once he knew we were taking him with us, the words poured out. He told us about how the girls were so talky and chatty that he just couldn’t handle it anymore. He was overwhelmed by the noise, chaos and disruption to our usual quiet weekend routine. He was so grateful to have a break that he let us choose the restaurant, so we were able to get the nice lunch we’d planned on. We had a lovely, peaceful outing.

On the way home, we talked about the need to be good hosts for the remainder of our friends visit, especially since they’d been so understanding about going off on their own. He was very open to that idea because he’d had the time he needed to decompress. We told G how proud we were that he was able to ask for what he needed. Even if it took us awhile to really understand what he was trying to tell us, he didn’t give up, he kept insisting he go with us until we could work out the reason. I think this could be a major turning point for G – as long as DH and I remember to listen to what our son is trying to tell us.

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Published in: on September 18, 2011 at 7:22 pm  Comments (3)  

Party Like A … Third Grader

Today was birthday party day.  We’d let discussion of the party slide since our pink-eye driving trip to K’s neighborhood.  At breakfast, I asked G if we were going to K’s party today.  He answered with a definite, “yup.”  So off we went!

The mother could not have been nicer and more welcoming.  I was the only parent attending with their child, but she did a great job of not making me feel weird at all.  The parents organized some science experiments, like shooting off a rocket with baking soda and vinegar and creating electrical circuits to light flashlight bulbs with a battery, that G thought were great.  In between experiments, the kids played war and G did a good job of playing along.  He was basically a soldier that did whatever his team leader told him to do, but he had a blast.  He got a little pushy a couple of times but the family had an outdoor trampoline so whenever he started getting edgy we went out for a jumping break.   Almost all the boys were really nice to him – there was one that was not, but since I was right there the whole time he quickly realized he wasn’t going to get anywhere and started avoiding G.  The boys thought the present G selected was the coolest thing ever.

The party was incredibly long, 10-3, because it was a teacher work day.  At 1, I decided we needed to head and was able to get G into the car.  On the ride home, he had a complete meltdown so I know I timed our departure perfectly.  He’s been very sensitive this afternoon but nothing more than we expected after such a sensory event.  I’m incredibly proud of how well G did and thrilled that he had such a great time.

Published in: on November 12, 2010 at 5:36 pm  Comments (1)  

Sometimes, You Get Lucky…

G has been invited to another birthday party!  An enrichment classmate has a mother that has taken an interest in G – not in that patronizing, somewhat sadly sympathetic way – in a very supportive way.  Her boy is going to have a science themed party where she’ll be doing different science experiments and she thought G would really find it interesting.  I’ve become much more comfortable asking for what G needs these days, and when I asked if it would be ok for me to hang around at the party to make sure G was ok, she was extremely welcoming.  She said I could help be her lab assistant!

Everything was lining up perfectly until I informed G of the invitation and he declined with a firm, “no thank you.”  Remembering G’s birthday and his non-party and how respecting his wishes worked out for the best, I backed off of what I wanted for him and let the idea of the party go.  But I had him choose a gift for the boy anyway, teaching him of the etiquette of sending a gift even if he didn’t attend the party.  G chose a pretty cool lazer alarm type toy from a line of kids spy gear.  The birthday boy has two younger siblings so I think he’ll really dig it.

Sunday, G came down with pink eye.  We’re not quite at the point where he’s been on medication long enough to attend school, so we’ve been cooped up in the house for two days.  However his energy level is perfectly normal which means we’re all driving each other crazy.  Because of this, we decided to get in the car and go for a drive.  On our outing, we happened to drive through the birthday boy’s neighborhood, which is a bit out of the way so it’s not somewhere G has ever been before.  G connected the dots on his own and we listened to him process the information out loud, “K lives here.  K’s birthday party will be here on friday.  If I went to K’s party, I would be coming here.”  DH remembered the name of the street where K lives so he quickly made a turn and showed G the 4 or 5 houses that could be K’s. 

Suddenly, G seems much more open to the idea of going to this party.  It had never occurred to me to do a dry-run, although I don’t know why.  We prepare him for school by having him see his class before the first day, so showing him the location of a stressful social event only makes sense.  I think between the science theme, which G adores, the super-cool present he wants to give K and seeing the location before hand, he may just decide to attend and will have fun.  We won’t push it – I’ll wait for his cues and won’t ask if he wants to go until the morning of the party.  Who knew a case of pink eye could be a good thing?

Published in: on November 9, 2010 at 2:02 pm  Leave a Comment  

Not Proud

I had one of those conversations with my sister where I knew I was being overly sensitive and prickly, but I couldn’t seem to dig deep and find the maturity I needed.  She called because her three-year old daughter was invited to her first playdate by a preschool friend.  At first, I said all the appropriate things with all the right inflections so as to share her excitement.  I was totally lying, because inside I was seething with jealousy about how easy it all is for her, but I did a good job of not letting on.

Until the end of the conversation when she said she had to call me to share her excitement because she knew I’d understand.  I didn’t have much ‘fake it’ left in me so I told her honestly that while I was very excited for her (see – faking it!) I was also a little jealous.  She pointed out, rather huffily, that I had called once (once!!) to share excitement about G being invited on a playdate, as if to say it was only fair that she be able to do the same. 

And she’s right, she should be able to share these things with me.  I should have been able to look past my feelings to be happy for her.  But it was such a low moment for me.  It made me see that she doesn’t really get how huge it is to have your autistic child invited to a friend’s house.  Or just how huge it is for your autistic child to have a genuine friend.  I could state exactly how many playdates G’s had by reviewing this blog, as I have an entry for each and every one of them because they were major events in the G household.  Actually, I don’t even need to go that far, I can recall the events from memory (all three of them) because they were that huge.  And really, the first was before we got an official diagnosis, the second was when we returned the invitation but haven’t been invited back since (making it a pity playdate) and the third was when I offered to babysit another school parent’s child.

I apologized and tried to explain my feelings.  She was still insulted but I think she started to understand, just a bit.  She got quiet and commented that there is another little girl with Down Syndrome in the class who has taken a shine to her daughter.  She said maybe she’d offer to host the playdate and invite this other little girl as well.  I hope she does – she has no idea how much it might mean to the other family.

Published in: on October 25, 2010 at 3:45 pm  Comments (2)  

People Suck. School is Awesome.

A week ago (it took me that long to calm enough to write about this) we took G to a music festival in our town that had a section with kids activities like inflatable slides and bouncy houses.  G was well rested, well fed, had calm time before we left and we had our bag stocked with earplugs and his video games.  DH took G to the bouncy house while I stayed behind with some friends. 

According to DH, he was watching G do very well bouncing with other kids.  It was relatively empty, with maybe 5 kids there when G bounced into a small girl.  It was clearly an accident.  The girl’s mother started yelling at G to watch what he was doing and to be more careful.  G didn’t respond at first, as is typical for autism and G, so she continued to loudly berate G. Then G turned to her and told her to, “Shut Up.”  Not great.  She then started to berate G for rudeness.  DH, who had been trying to intervene throughout this exchange, got G out of the bouncy house, let the lady know the initial incident was an accident and started to get G’s shoe’s on.  The lady demanded an apology, so DH apologized for G’s rudeness.  The lady then told DH she wanted the apology from G because G needed to respect his elders.  At which point, DH told her that G was autistic and couldn’t understand why she was still yelling at him for an accident.  He got G away from her without waiting for a response.

I get that she was upset because her daughter was knocked over.  But it was a bouncy house, that’s going to happen.  I absolutely understand that a child telling an adult to shut up is inappropriate.  However, this is an example of how what is completely unacceptable to one family is great progress to another.  Noise and chaos is difficult for G.  A stranger loudly yelling at G is stressful.  But he didn’t meltdown, shriek wordlessly or strike out at the closest child to vent his frustration.  (which probably would have been this lady’s daughter)   In this situation, he used words instead of action and correctly targeted the source of his frustration.   I’ve mentioned before that for G to replace aggressive behavior with words, the words must feel like a satisfying replacement.  If we tried to teach him to say, “ma’am, please lower your voice, I can’t think to respond when you’re yelling,”  we’d never get anywhere. 

And I have to say, I’m pretty pissed that the woman even thought yelling at G was acceptable.  DH was standing right there, I dare say hovering because that’s what we do, so why didn’t she turn to DH to resolve the issue before yelling at someone else’s child?  G is rude and needs to respect his elders but she can be an aggressive, interfering boar?  What kind of example of the behavior she seeks is that?  People suck.

On the other hand, school is awesome.  G is doing really well.  All kids go to technology class once a week, and at the start of the year they take tests on the computer to evaluate their reading and math skills.  The program used is one where the more correct answers the child gives, the harder the questions get and the scores determine which kids need to go to enrichment.  G’s reading scores were about average for the enrichment group and his math score was one of the – if not the highest.  And this is after skipping a grade!  We had a meeting to discuss his learning plan for the year and I was bursting with pride.  I also got some great tips from an article over at The Thinking Person’s Guide to Autism regarding reading comprehension that I think will really help him succeed. 

They allow some non-fiction for reading comprehension but really stress working on fiction.  So I used the wording from the article to explain social assumptions often used in fiction and how that can be difficult for someone with autism.  It sparked a good discussion on what those social assumptions are, how more straight forward fiction is better and G’s teacher was able to add to the discussion to give examples of where G has trouble retelling the story when motivations are assumed to be understood instead of explained outright.  I feel really good about his plan and think the team really gets where G is coming from.

If only the rest of the world could too.

Published in: on September 27, 2010 at 10:03 am  Comments (6)  

Birthday Celebrations

Birthday’s are often stressful events when you have an autistic child.  Maybe the child doesn’t get invited to parties and notices they’re excluded.  Maybe they do get invited to parties and while exciting, the event becomes overwhelming for the child.  Then there is the matter of what to do when it is your child’s birthday.

G’s was this past week.  He had been talking about having his birthday party at a specific park since last year, but in the last few months he’d changed his mind and wanted no party at all.  I was torn on this decision.  On one hand, I understood and empathized with his feelings, knowing it was an incredibly stressful experience for G.  On the other, I was sad that he realized just how difficult parties were for him.  And I worried that he’d change his mind after it was too late and it would become this traumatic experience he’d be reliving in therapy as an adult. 

One great thing about this year is that school started early, meaning G’s late-august birthday would occur after classes began.  He became very excited about this – he’d seen other kids bring in birthday treats and couldn’t wait to do the same.  We have a local diner/ice cream shop that bakes gourmet cupcakes and he decided he really wanted to bring in some of these special cupcakes.  Since we weren’t spending any money on a party, it seemed like the perfect solution!  We confirmed with his new teacher that treats were appropriate and placed the order.

The day of his birthday coincided with G’s day to bring in a “Me Bag.”  Each day two children bring in a bag filled with things that represent them and give a presentation in front of the class.  The children sign up for a day themselves so the project is very much in their hands.  G picked the day of his birthday himself, told DH about his assigned day himself, (which in itself is huge) and selected the items for his bag with minimal input from me.  Because it was his birthday, he asked if we could wrap a box to look like a present.  Ingenious! 

He had the best day.  His presentation went wonderfully – no signs of anxiety.  Kids were surprised and wished him happy birthday when he pulled out his little present.  They were also amazed and impressed that he was just turning 7 years old and in the third grade, which made him feel so proud.  The entire grade sang to him in the lunch room as is tradition.  And the cupcakes were a smash hit!  One boy was so excited, he couldn’t stop thanking all of us.  (He was so effusive I worry he is on sugar restrictions and his parents won’t thank us.  Oh well!)  Before eating the cupcakes, G’s teacher pulled out her birthday costume box and had G pick out silly things to wear.  Then he sat on a stool at the front of the class while the kids sang  to him again.  He was grinning from ear to ear.

The day was great.  G was so happy and I was so impressed with how well he handled himself.  He really took charge of the day in a way I’ve never seen him do before.  He hasn’t said anything about not having a party so there seem to be no regrets, as yet.  I feel we made all the right choices this time.  Sometimes I work so hard to give G the typical childhood experiences so he won’t miss out and they backfire because they’re not what he needs.  This time, we really listened to what he was telling us, and he got just what he wanted.

Published in: on August 30, 2010 at 10:22 am  Comments (1)  

Camp Breakdown

The second session of camp is not going well.  G is having the types of behavior problems we haven’t seen since last September, where for what seems to be no reason at all, he will hit/punch/push another child.   Unfortunately, the child he’s been hitting is the other camper with special needs.  (specifically, SPD but not autism)  I feel just terrible about this situation. It is never good that he hits anyone, but to hit another child with a disability is mortifying.  We’ve heard via the counselor that the other boy’s parents are upset that G is picking on their child. 

What I want to explain, but have not yet had the opportunity, is that part of  G’s autism means he does not have the ability to select a child and pick on them.  What is the more likely scenario is that their boy’s manifestation of his disability is triggering a sensitivity that is a part of G’s disability and G is lashing out in frustration.  This is an explanation, not an excuse. 

What we need to know is what is happening between the boys before G hits.  If we can determine the trigger, than we can work with G to either avoid the trigger or to handle it in a constructive way.   But this information is not easy to come by.  G knows he is not supposed to hit so when we try to talk with him about what caused him to hit, he goes straight into emotional meltdown.  What I learned from listening to Tony Attwood speak this past weekend (a conference post is pending) is that kids with Asperger’s don’t always have the ability to look at a past event in perspective.  Instead they relive the event as if it were happening again at that moment and feel the associated emotions as acutely as they did during the actual event.  I find this to be true with G, talking about why he hit this other boy seems to trigger shame, frustration and anger. 

We’re not getting answers from G, and the counselor is overwhelmed.  She doesn’t have another fully trained counselor working with her, instead she only has a junior counselor so she only sees the event after the boy has been hit.  There were two junior counselors last week so she had a better handle on the group, but one has been reassigned and now chaos reigns.  I’m extremely irritated with the camp program for their staff scheduling because we worked really hard to get them to realize that we were sending a child who needed more support than average. 

 I’m especially irritated because my first warning that camp wasn’t working out was a phone call yesterday afternoon where the camp administration asked if we could provide an aide for G because they weren’t able to provide the level of support he needed. The point of all the advance training with the BOCES was for them to understand and provide this extra support, as we were assured they were a fully inclusive organization and were familiar with handling campers with disabilities.  ( Ok – I can feel my blood pressure rising so I’m going to take some deep breaths and try to finish this post without ranting.)  What ended up happening after 10-20 phone calls to various resources is that the adaptive sports program was able to get volunteers trained in cognitive disabilities to act as G’s aide.  They’ll not only be able to help him take breaks as needed, they’ll be able to see what is going on between G and this other boy to help us figure out the trigger for the hitting.

I fully understand we’re not in a righteous position, as G is the one doing the hitting, but I’m also frustrated with the lack of understanding on the part of this other family.  I’m frustrated that this family just dropped their child into camp with no warning when we’ve busted our butts to make sure everyone was ready for G. Even though they clearly don’t have the aggression issues we have, I would expect them to have a better understanding of the situation.  If a disabled camper were hitting G, I would work to find a solution rather than blame the other parents for not being in control of their child.  

There are two more days of camp with this particular family to get through.  G has one more week of camp scheduled for August and we’re going to work with adaptive sports to have an aide with G.  In addition to providing excellent social opportunities throughout the summer, G really loves camp and really wants to participate.  Which makes me determined that he will participate, no matter the angst and frustration it causes for me or anyone else.

Published in: on July 21, 2010 at 12:26 pm  Comments (2)  

Ehhh…

So… the birthday party.  It was a bit of a mixed bag.  DH and G were camping Saturday and Sunday and got up with the sun on Monday to return home in time for the party.  That part was very easy, as G always gets up with the sun.  However the day before, G got about 10 bug bites all over his head.  He woke up melting down from the aggravation.  He was upset enough that DH stopped at the closest pharmacy and dosed him with Benadryl to try to help control the itching.  G typically responds to Benadryl by spinning up for about three hours before crashing hard.  Which unfortunately meant he was crashing just in time for the party.

He had a bath and was getting dressed when he decided that he didn’t want to go to the party anymore.  I knew that was a temporary sentiment – he’d been talking about the party all week – so we made him go and told him we’d only stay 30 minutes if that was really what he wanted.  When we got there, he wanted nothing to do with hockey so he sat in a chair and watched the other kids.  He munched on some chips and drank lemonade but didn’t interact with anybody.  Even when the kids took a break from hockey for burgers, G wouldn’t talk with any of the boys or turn his chair to face the group.  Participating in the big group activities was always going to be a stretch for G, but he wasn’t even his typical quirky but charming self.  I was really hoping that other parents would see how fun G could be so they’d think of him whenever they were planning summer get-togethers, and I don’t feel like that goal was accomplished.

On the other hand, there were several parents attending and I was able to get to know new people.  The hosts were amazingly welcoming, the guests knew about G from their own kids and were wonderfully accepting.  Even with G acting very out of it, I was pretty relaxed.  Maybe even more relaxed than I would have been if I were watching him play hockey because I’d be keeping more of an eagle eye on the situation.  I feel as if I made inroads into the community and created some relationships with other adults.

So overall, it wasn’t the most successful event but it wasn’t the worst.  I think if we’d thought about coming home on Sunday instead of Monday, he may have been more rested.  But the Benadryl would still have been necessary and would still have done a number on his energy level.  He did have some great social experiences with the kids he was camping with.  I guess it comes down to a difference in perspective, and I have to remember that any good social experience is still good for G right now.

Published in: on June 1, 2010 at 2:16 pm  Comments (1)  

Going Over the Edge

So this birthday party …  I’m more than a little anxious.  I took G to the toy store to buy R his present.  G, who is extremely excited about the party, already knew what he wanted to buy.  He and another classmate, Z, had been talking about nerf gun wars with R and decided they would both get R a nerf gun.  The problem is that our tiny town, the one with no chain store within 100 miles, did not have a nerf gun.  So G settled on a marshmallow shooter and we got R a giant bag of marshmallows to go with it.

The party is a street hockey party and kids were asked to wear jerseys and bring hockey sticks.  G could care less about professional/college sports and does not have any kind of jersey.  He also doesn’t have a hockey stick – he is afraid of skating so he’s never been interested in ice hockey.   While I got hung up on buying the perfect gift for R, the hockey details are what DH was most concerned with.  The guys went camping this weekend, planning to pack up when the sun rises monday so they make it home in time for the party, and on their way to meet our friends at the camp site, DH stopped at a S*ports A*uthority to buy G the street hockey equipment he needs.  This tells you that while the camping plans were over 100 miles away, DH has planned how to make it back so G doesn’t miss the party.

Clearly, we are over-amped about this frickin birthday party.  G has never, ever, ever been invited to a party purely on his own merits.  Past parties have been an invite-the-entire-class affair or the kids-of-my-girlfriends events.  I swear, we’re being realistic about how it might go and are prepared to take G home after 30 minutes if he gets too overwrought.  We’ve gone over the rules of street hockey so he knows (in theory) not to hit other kids with his new hockey stick.  We’re prepared to handle a situation where he melts down and goes on a rampage with said stick.  We’re very much relieved that the invitation specified that parents are welcomed but not required, so we can ride herd on G without it being an awkward thing. 

But anything we can do in advance to make sure he has the best experience possible, we’re doing.  We’ve made sure he’s equiped with hockey gear, the right present and social stories outlining situations he may encounter.  I’m a little nervous that he’ll go straight to the party after camping, but am reassured that he’ll have a lot of downtime in the car to nap or chill out with his video game on the way.  And I just can’t help myself – I feel like that if the party goes well, it is a stepping stone to G being invited to other parties, and if we can click with the other parents, the first step to playdates over the summer.

Tell me this gets easier.  I don’t think we can take this level of stress over the long-term.

Published in: on May 30, 2010 at 4:01 pm  Comments (2)  

Birthday Invitation!

G got invited to a birthday party!!  He’s been to two parties in the 4 years we’ve lived here and both were the kinds of parties where everyone in the class was invited.  This party is different, he was specifically invited by his best friend in class.  G is sooo excited!

It was a pretty stressful day for me, he came home yesterday and told us he was invited to his friend R’s birthday.  But G is not good at relaying information from his day at school so that was all he knew and there was no invitation in his backpack.  We didn’t know if he was really invited, or maybe he overheard R talking about his party and assumed he was invited.  These are the kinds of social minefields we navigate.  I knew if G had gotten it wrong, he would be crushed.  I started getting really nervous, trying to figure out how to approach the mom to ask for clarification without forcing G into the party.  But today at drop-off, R’s mom sought out DH and conveyed all the information.  G was right, he was invited to R’s birthday party!

This is wonderful on lots of levels.  First, G was able to remember important information and tell us about it hours after the fact.  That’s pretty amazing for G.  Second, G has a friend!  A friend that likes him enough to invite him to his birthday party!  This is a really big step for G.

Published in: on May 25, 2010 at 1:05 pm  Comments (1)