The First Week of School IEP Woes

Panic attacks.  I am having panic attacks.  Nightly.  About this school year.  Every. Damn. Night. (sorry, I don't usually swear but in this case it is warranted.  I hate panic attacks).  It started out at the end of the school year last year.  Franklin's last days of kindergarten.  There were meetings with the teacher to discuss what his first grade year would look like.  His teacher said she wanted to put him in inclusion for half the day and in structured the other half the day.  Sounds simple enough, except she wanted to put him in Kindergarten for his inclusion.  Right away I took issue with this.  Franklin has an insanely high IQ, I felt like him repeating kindergarten was not the right move.  Over and over again I let his teacher convince me to go with this plan because he is very small and she thought it would be good for him socially.  So, over the summer we've really been working hard on the social stuff and he has made ENORMOUS progress.  In addition, I studied the videos from school that were sent home at the end of the school year, and it showed how well Franklin was doing at school, how well he was focusing.  After watching those videos over and over and over again, I concluded he was able to do so well at school because of the structure, because he had the one on one attention and was in a classroom with a teacher who specializes in kids just like him.  The discomfort I had with the plan for this school year increased and I had multiple conversations with Dr. M, who agreed with me. So I sent Franklin's teacher an e-mail requesting an IEP review.   We had the meeting at a time when Dr. M could come, and David too.  Franklin's teacher asked me to send her an e-mail detailing what we would be discussing, so I did that and I also sent it to Dr. M.  When we got to the meeting, I explained what I wanted, and Franklin's teacher looked shocked.  Apparently she never received the e-mail.  I talked about how I didn't want Franklin to be in inclusion this year and yet again,  that I wanted him in only structured and to go to specials with first grade.  I am seriously frustrated.  I feel like despite my best efforts, I was made to look like a complete and utter crazy woman.  At one point, David even said he agreed with Franklin's teacher instead of me because I "obviously" misunderstood the intent of the plan.  Once I explained what I wanted, he went back to agreeing with me again.  However, I feel like I was shut down, yet again.  The more I think about it, the more anxious I get.  I really feel like I was being treated like "Oh, Elizabeth's just being overbearing, she'll get over it" and not being taken seriously.  In addition, now I feel like the teacher is avoiding me.  I've sent her e-mails and she hasn't responded to them.  Last school year she was always quick to respond.  So...it could be that she's got a lot less time this year...it could be that she's been working non stop to get ready for the school year and that the first week of school is hectic.  That's probably the reason.  But my overly anxious mind is going straight to avoidance.  It's convincing me that she is avoiding me because she's mad that I called the IEP meeting and she's ignoring me.  That probably isn't true, that's just what my anxiety it telling me.  And it is made worse because the last two days Franklin's been really anxious and upset.  He's been stimming like crazy, we've even seen the appearance of some of the more severe stimming that went away during the summer.  This morning when I went to get him up, he started crying and had a total meltdown.  His classroom was changed and it is causing him to be extremely upset.  There's not much that can be done about it, but it still breaks my heart to see him so upset and anxious.  I suffer from anxiety and I know how much it makes a person suffer.  I hate to see my precious child in such a state, which in turn is just causing my anxiety to skyrocket.  The fact that I feel like I was not taken seriously and just pacified, that my request to keep Franklin in all day structured completely shot down, is giving me panic attacks.  I know we're not locked into this arrangement, that we can adjust it as needed, that we are going to try and check in...but I still can't help feeling like the way I feel about the situation doesn't really matter to anyone.  And I am Franklin's mother.  I know him better than anyone, and yet I feel like nobody will listen to me.  And I can't sleep at night, I am having panic attacks, and I can't sleep...and I need to sleep because Baby N doesn't sleep and so when I have the opportunity I need to sleep.  For now I think I will just let things lie, see how things go, but it's hard when I have all these thoughts and feelings in my head.  As a teacher I was on the other side of this many, MANY times, as a parent, there is so much emotion involved. The last thing I want to do is to alienate Franklin's teacher or have a contentious relationship with her.  I really like her, she's an amazing teacher, she loves Franklin, and I truly believe she has his best interest at heart.  I don't believe she's trying to push her own agenda, I just think she really can't see the full picture of Franklin because he DOES SO WELL AT SCHOOL.  But that is a compliment to her, and the structure and environment she provides for him.  That is something I definitely struggle with at home.  I just wish I didn't feel so lousy right now.  Hopefully things will be ok because all I want is for Franklin to have success at school, and in life.  I just want him to be happy.  He is my child and I will always fight for him.
Enough rambling.  I need to go have a glass of wine.  Maybe that will help me calm down a little.  Wine...  Mmm...Good thing I have a nice bottle of syrah in the wine fridge.  Until next time friends...here's to all of you out there in Autismland fighting for your kids!  I raise my glass to you! I also raise my glass to all the teachers who are working with our kids and dealing with "crazy" Autism parents like me. You deserve a drink too!

The Awesomeness that is Temple Grandin, and other Random Randomness

Aah....The end of summer.  The moment every Autism parent waits for....the first day of school...It's almost here.  One more week.  I can feel it.  As a teacher I used to dread the end of summer.  As an Autism mom, I am going to celebrate it with champagne mimosas as soon as Franklin gets on the bus!  And this year is even better because Franklin's going to be in first grade, which means he will be at school ALL. DAY. LONG.  It's not that I don't love my child, and it's not that I don't love spending time with him, it's just that  I am so tired.  I am so worn out.  I'm starting to come out of survival mode for sure, but having two children who are so diverse in age, and one who STILL doesn't sleep at night, and the other who has endless amounts of energy is stressful.  I mean, that Energizer Bunny's got NOTHING on Franklin!  On the other hand, we've made MASSIVE progress with Franklin this summer.  He's really doing well socially, and we are finding our way for sure.  I definitely feel like we were in crisis mode at the beginning of the summer, and now we've managed to work through it, and we're much happier as a family.  I feel like we're making connections and that's a HUGE deal for us.  I feel like we're enjoying each other, and much happier.  I feel like my survival mode is slowly going away, and that I can finally find little moments of calm, little moments to breathe.  It's not perfect, far from it, but it's progress and progress feels good.

So what has happened to initiate this change?  Well...we've been working hard with Franklin, providing him opportunities to play with other kids.  He's got little buddies that are also on the Autism spectrum and they are all learning together.  We just had Franklin's birthday party and that went off without a hitch!  It was REALLY fun and I really enjoyed spending time with my family and all our friends' families.  Franklin's really come a long way with learning how to play cooperatively, and learning social skills.

Franklin's Dog - "Pom Pom"

In addition to pushing the social interactions within our own community, I've also started doing things for myself.  Things that I enjoy.  I've picked up my knitting needles again.  Despite being massively sleep deprived, I needed to start knitting again.  It's something I really enjoy and it relaxes me.  Knitting helps me release stress and since I've started knitting again, I feel like I've been able to manage things a little better.  Franklin LOVES dogs and he had been begging me to knit him a dog, so I did.  And it felt good to pick up my knitting needles again.  Then I decided to try my hand at

The chick pattern I wrote myself-
pretty good for a first try!

writing my own pattern, so I designed a pattern with the logo from our Autism support group- a round chick.  That felt good too.  The more I knit, the better I feel.  Sometimes though, I feel like that's all I want to do, and wish I could just have more time to do it.  School is starting soon, so I am hoping that I will get more time to knit.  What's interesting though, is that earlier this summer I was diagnosed with Adult ADHD.  In some ways, that was a shock to me because I was so successful in school growing up. I made it through high school, college, grad school, and National Board teacher certification with no problems.   However, I've always struggled with organization and it's always been really hard for me to keep my living and work spaces clean and organized.  I've also struggled my entire adult life with anxiety and had severe Postpartum Mood Disorder after the births of both of my children.  My psychiatrist suggested that once I am done nursing Baby N that I start taking Ritalin.  I laughed.  I laughed because I heard that Ritalin has the opposite effect in adults that it has in children.  I had flashbacks to that episode of Desperate Housewives when Lynette took her son's Ritalin to help her stay up all night working on projects for the school PTO.  And then I thought about it, I am so sleep deprived, and I am to the point where messes in my home cause chaos in my head.  Yet, it's really hard for me to keep up with the kids, and the housework, and the therapies, and all the stuff I need to get done.  I feel like I never get time for myself, to do what I want to do.  I think that is why I enjoy knitting so much.  It's a chance for me to focus my attention on something that makes me happy and that lets me be creative.  It doesn't demand anything of me,  it is something I can do in front of the T.V. and relax.  And now...onto the next topic...

Me with Temple Grandin 

Last week, I went to the Autism conference here and Temple Grandin was speaking.  I was SO excited because I got to meet her!  What an amazing and inspirational person she is to the Autism community!  She had a wealth of information on how to support kids with high functioning Autism like Franklin.  One thing she suggested was to make sure our kids have jobs to do, whether it be helping walk a neighbor's dog, or picking up leaves outside.  Anything that helps people outside the home.  It's really important because it teaches our kids to be social and feel important. I started brainstorming things Franklin could do.  He LOVES dogs, so I thought maybe he could help me make dog treats and we could take them over to the animal shelter.  I also thought maybe we could set up a lemonade stand for him in our backyard and he could offer golfers a cold drink on a hot day.  I know that Franklin loves helping, the key is making him feel like his help is really NEEDED and IMPORTANT.  I really enjoyed hearing Dr. Grandin speak, I have to say, it was the highlight of my summer for sure!  What was funny, is that she's so accomplished, and an adult, and yet, she still has those "Autistic" quirks.   I kept saying, "FRANKLIN DOES THAT!"  For example, throughout her entire speech, she kept saying, "I'm getting on a plane at 5.  I'm stopping in Denver. Then I have a flight to Houston," over and over and over again at random points.  Franklin does things like that.  She also had no filter sometimes, saying exactly what she thought.  At one point she didn't like the setup of the screens for her Powerpoint presentation and she said, "well this is stupid!"  It was quite funny when she said what was on her mind, and it was genuine and authentic.   She talked about letting our high functioning kids be eccentric, letting them be the "geeks and nerds" but also teaching them to be professional, to present themselves in a way that is respectful to the world.  I think the most important message I took away from hearing Dr. Grandin was that we need to let our kids be who they are while also teaching them how to become functioning and productive members of society.  There was one quote that stuck with me more than any of the others and that is when she said this, "There have been geeks and nerds throughout time.  Which Caveman do you think made the first stone spear?  It was some Asperger's type banging on a rock in the back of a cave."  So true.

After all the progress we've made, and listening to Temple Grandin speak, I realized that I am really not comfortable with the current plan for Franklin for this next school year.  To the point that I've been having panic attacks over it.  At the advice of Dr. M I have requested an IEP review.  I am VERY nervous to have this meeting.  I am nervous to shake things up, but ultimately I need to do this for Franklin.  Anyway, the meeting is on Monday morning, bright and early, so good thoughts would be appreciated!!

Happy End of Summer to all of you out there in Autism Land!

Summer Survival Mode

I attempted to write this post yesterday, but I was in an absolutely FOUL mood.  And I mean it was bad!  I haven't been in that kind of a funk in a long time.  Life's just getting a little overwhelming lately and my one year old isn't sleeping.  I think lately I've only been getting about 3 hours of sleep a night at the most.  Life is a whole lot harder when you aren't able to get enough sleep.  I am trying everything I know to help my little guy sleep but he just screams and screams when I put him in his bed.  And he wakes up every hour to two hours at night and screams more.  That wakes Franklin who can't stand the noise and then he starts screaming for the baby to stop screaming and then we have a scream fest in our house!  Fun times, fun times.   In addition to the lack of sleep, we've been dealing with some homeowner issues.  In October we bought a new house located on a golf and country club.  For the most part, we have been VERY happy with our "golf course" living and have found the golfers to be very pleasant and the view to be amazing. 

View from my deck

 However, whenever the country club hosts a tournament, we have issues.  This past Monday the country club held a tournament for the wine and grape growers (we live in wine country) and IT. WAS. CRAZY!   We had people driving their golf carts into our yard, breaking sprinkler heads.  We have a very large sycamore tree on our side of the property line where people chose to congregate to be in the shade.  They threw trash in our yard, they were smoking in our yard, they threw beer cans in our yard.  In addition, a few of them decided to help themselves to our deck and patio furniture.  All of this was highly distressing to Franklin who became more and more anxious with each intrusion into our yard.  One guy swore at me and told me to deal with it when I told him to get off my property.  We called the country club and they promptly blamed us for the issue, saying we needed to be more accommodating.  I am SORRY but I am not about to cede my property to disrespectful golfers!  There is a clear property line and they were on my deck for goodness sake!  So I got the HOA involved, who said we could build a fence.  And build a fence is EXACTLY what we plan to do.  If it makes the country club angry, oh well.  We have a child with Autism, so I am pulling the Autism card.  And that is that.  Now...onto what I really wanted to say...

View from my deck

Deck furniture 

So...the other day I was talking with a lady from church about how our summer was going.   She was saying how she's got her kids in all these classes and how they are working really hard at home from workbooks to make sure that her kids are on track to start school in the fall.  Then she asked me what we were doing this summer and I had to take a pause.  I mean, really, we're doing nothing.  Not a thing.  I told her we go to the pool a couple of days a week, we have gone bowling once, we've gone to Seattle twice...but other than that, nothing.  She looked shocked, and said to me, "aren't you a teacher?"  This question threw me.  Well yes, technically I am a teacher...I am certified, I taught full time before my kids were born, part time for a year before we left Iowa, I teach a few French lessons here and there...but I'm not actively working as a teacher...so I asked for clarification on why she was asking me that question.  She then asked me how, as a teacher, I wasn't "working on stuff" (her words) with Franklin because, "don't Autistic kids especially tend to regress over school breaks?"  Ok so this may be true, but honestly, I am in survival mode.  BIG TIME!  I mean, each day starts out with asking myself how exactly I am going to get through the day.  Each day ends with, "thank GOD this day is over!"  Each night is spent waking every hour to two hours with my one year old and trying to get him back to sleep without waking Franklin and having to get BOTH of them back to sleep.  I am in survival mode!  Should I be doing more?  Probably.  But I honestly do not have the energy to do anything more than what I am doing.  We get up, we eat breakfast, the babysitter comes over and I get my errands done, then it is lunch, nap time (yes, even though Franklin will be 6 in two weeks, I still make him have a "rest" because I am utterly exhausted and need some quiet time to take a nap myself).  After nap, if we have time and I am feeling up to it, we go to the pool for an hour or so.   Then we come home, I make dinner, clean up the kitchen, then it is bath time and bedtime.  And I literally spend HOURS trying to get my boys to go to bed, especially the one year old.  Throughout the day, I am constantly having to deal with Franklin's meltdowns, pestering his brother, anxiety riddled questions, hyperactivity, and defiance.  I. Am. Exhausted.  So what am I doing to make sure he's ready for first grade?  NOTHING!  And I am ok with that, because right now it's just about getting through the day.  Do I like feeling that way?  Nope.  Do I wish I could do more?  Yes of course!  But I have two small children, and I am getting almost no sleep, so I have to do what I have to do to get through.  In the fall Franklin will start first grade so he will go to school all day, so I will just have the baby for most of the day.  I feel like if I can get some sleep, and some quality time to myself, I can probably get myself out of this survival mode.  But as it stands right now, I can't wait for school to start.  I love my boys, but honestly, I need a break!  The end.

Oh...The Fun that is a Change in Routine

The fallout from a change in routine can be felt several days after the change actually happened.  We are dealing with that exact thing right now and I. AM. EXHAUSTED!  Franklin usually does ok while the change is happening, it's afterwards that we pay for it, sometimes for hours, sometimes for days, and in some cases even longer.  We are still feeling the pain from moving, it's finally starting to get a little easier, but my goodness has it taken a long time for his anxiety to start to subside!  So today I am kind of in rant mode, wishing Franklin could handle the changes a little better, wishing I had not dared change his routine, wishing he would just leave me alone for 5 minutes so I can breathe!  Right now you're probably asking yourself what is happening?  Well, let me go back to last Monday.  David works on rotating shifts and last Monday his schedule changed from working to the day to working a weird 1 pm to 11 pm shift.  Anytime David's schedule shifts to a shift where he has to work during dinner and/or bedtime, it sets Franklin off.  So for the past week, Franklin has been stimming like crazy, and he's started chewing on EVERYTHING!  It's driving me nuts!  He even went so far as to try to chew on a plant at Dr. M's office!  Then Thursday came another change in routine.  A few weeks ago I decided I wanted to have a ThirtyOne party.  I LOVE ThirtyOne bags and thought it would be fun to have a party, plus I NEEDED some adult time with friends.  I set it up with the consultant and invited my friends over.  I made sure our nanny was available to hang out with Franklin because I knew just having MY friends over would overstimulate him and shake things up.  I wasn't going to let other kids come over, but I allowed it because I felt like it would be a good social opportunity for Franklin and the nanny would be here to keep an eye on things.  The kids got a little wild, but all in all I think it went ok.  But...it was a change for Franklin, something that typically overstimulates him and shakes him up, so while he did ok DURING the event, his brain was very tired afterwards.  He spent a good three hours in a state of sensory overload.  The next day was Friday, David's day off, and the day we had decided to go car shopping.  Franklin and Baby N were with the nanny ALL DAY LONG from 9 am to about 6 pm.  Add to that the excitement of bringing home a new car and It made for a week of interruptions to Franklin's routine and major brain fatigue.  So yesterday and today David and I have been dealing with the fallout of all these changes.  Franklin has been driving us absolutely INSANE!  I know it's not entirely his fault, but honestly, it's tiring.  He's been clingy, pestering, bouncy, and demanding.  He's been defiant, and argumentative.  It is emotionally exhausting.  He is constantly in our space, and being rough with his little brother.  He is asking the same questions over and over and over again.  I can tell his anxiety is taking over since he had some unknowns this past week.  Seriously though, I just wanted to go to the bathroom, take a shower, sit down and eat without, "MOMMY! MOMMY! MOMMY! MOMMY!" and pulling on me, and pushing me, meltdowns, and defiance.   I swear it took me three hours this morning to simply do the dishes and wipe down the kitchen counters because Franklin was constantly on me, literally, pulling on me, scratching me, hitting me, screaming.  I tried to make a phone call and the second I got on the phone Franklin started screaming, "GET OFF THE PHONE!" and pulling on me and trying to trip me.  He won't leave Baby N alone, constantly taking his toys, trying to move him where HE wants, poking him, trying to make him do things he wants and not what Baby N wants, which of course is making Baby N cry.  And of course Franklin only operates in one volume - LOUD- or maybe two volumes LOUD and amplified to 11.  Amplified to 11 would be LOUDER and only when Baby N is trying to take a nap.  I tried making Franklin rest while Baby N was taking a nap and instead he chose to jump from his top bunk to the floor thus in turn waking Baby N who is now cranky.    How he managed not to severely injure himself is beyond me...that little daredevil!

I considered taking Franklin swimming this afternoon but unfortunately, I am too exhausted and fear that he will not listen to me, so it's not worth the stress.   So this has been my weekend.   I keep having to take deep breaths and tell myself that Franklin cannot help it.  His brain is tired and he is acting out because his brain is tired.  Those changes are a lot to process for him and he doesn't have the same function of his frontal lobe that the rest of us have.  I have to keep telling myself this because even though I know this in my executive state (as Dr. M calls it) it still greatly frustrates me. It tires me.  It's hard to constantly deal with the behavior issues that arise from changes in routine.  This is why we typically cannot do things that are outside of the routine.  It's really hard to live like that, there are times when I would LOVE to be able to be spontaneous.  It seems that no matter how much we prepare Franklin for a change in routine, we still have to deal with the fallout.  I guess we have to learn to help him realize that life is full of changes and we just have to do the best we can.  And honestly, I am doing the best I can.  Baby N doesn't sleep well at night still, and I am still dealing with sleep deprivation and living on coffee, so that coupled with the Autism behaviors is really trying.  I am doing the best I can.  I am doing the best I can...and that's all I can do for now.

Minivan

For the past several months we have been researching a new car to buy to replace our VW Tiguan.  The Tiguan was nice, but it was getting a little small for our family and the warranty was up on it so of course little things started to go wrong with it.  SO, the research began.  At first, I was REALLY anti minivan.  NO WAY was I going to be the type of mom that drove a minivan.  NO WAY, NO HOW, JUST NO!  But as I started to research it, I started finding that many of my Autism mom friends had minivans and then I started to realize how Autism friendly minivans are!  First of all, let's start with the fact that they have sliding doors so that my child does not open doors into other cars, or walls, or any other place you can bang a car door.  Many of the minivans now come with dual or triple zone climate control, so my sensory overload child can have the temperature to his liking in his specific area of the van, and we can make sure that the vents are not making too much noise in that area.  Many of the models have sunshades on the back windows so that my child can adjust the brightness to his liking in his area of the car.  These, plus many other nifty features make minivans very Autism friendly.  So the search began for the perfect minivan for our family.
Franklin found out we had decided on a minivan, and I am telling you, I have never seen a person more excited about getting a minivan than him!  Every minivan catalog we collected he studied carefully, absorbing all the details from every page.  He watched YouTube videos on the different minivans.  He would tell us over and over again the different stats on each of the minivans he had learned about.  He would draw pictures of minivans, build minivans out of legos,  "play minivan" by building one out of pillows and putting his stuffed dogs in it.  He even merged some of his other obsessions with the new obsession of the minivan- like, Jesus going for a ride in the minivan, Franklin the turtle going for a ride in the  minivan.  And of course, the minivan HAD to be blue, which he reminded me of, like, every 10 seconds.  "Mommy, don't forget, I want a blue one!" Generally driving David and I nuts over the minivan and obsessing over it every waking minute of his day.   (Blue is Franklin's "calm" color.  He loves blue.  Everything in his life has to be blue). So anyway, the Tiguan did something weird for the millionth time (the parking brake kept engaging while I was driving it) so David and I

decided we had better go trade it in.  So, we made a plan and decided to go on David's next day off.  That day was yesterday.  I was nervous because our
wonderful babysitter was going to have to stay with the boys for the ENTIRE day.  I'd never left the baby more than two hours before, he's 1, but I was still nervous.  We picked our top three and went and test drove them and decided on the Honda Odyssey.
  Unfortunately, the dealership did not have a blue one, and it would cost us more for them to find us a blue one.  We loved the car and fearing a meltdown I sent a text to the babysitter asking her to tell Franklin the van was going to be red instead and seeing his reaction.  Fortunately he was way too excited about getting the minivan to really care that the color was red.  Still, had we shown up with a red minivan when he was expecting a blue one, it would have been trouble...so I wanted to check first, just to make sure he was going to be ok with that.  Red is his second favorite color, so I figured that was the next best choice.  Of course, I had to explain all this to the salesman before we finalized the deal, because obviously I wasn't going to cause a meltdown over the color of the car.  We would have waited otherwise.  Fortunately the salesman was very understanding, and Franklin was ok with the red. 
As soon as we got home and Franklin heard the garage door open, he came running out and said, "DID YOU GET THE MINIVAN?"  He wanted to immediately take a ride in it!  He was SO excited! We took him for a ride in it, showing him all the cool features it has like the backup camera and the turn signal camera.  He called it the "car movie" and wanted to watch it the entire ride.  He also talked our ear off about all the different seat configurations he could think of during the ride.  When we got home, Franklin was so tired after the day of playing with his babysitter and the excitement of the new car, that he crashed on the couch before he had the chance to eat dinner.   It's rare that he gets so tired like that.  It's rare and it is wonderful when it happens because it means that he actually sleeps!
Today, Franklin's been begging for long rides in the new van, drawing pictures of it again, building it out of Legos.   I guess I should be happy that he loves the new car so much.  I mean, such a change can be hard for a child with Autism.  I could tell that Franklin was having anxiety about it, even

though he was super excited.  I am glad we took our time finding the car because it gave Franklin a chance to process the change and work through it in his own way.  I can tell that he's still having some anxiety since we brought it home because he's still drawing pictures and building it with Legos.  He's still reading the owner's manual cover to cover.  I think it will take some time for it to settle down, but I am grateful that he's having a positive reaction to it despite the anxiety from the change.   When you have a child with Autism it's so hard to make changes like that because it can cause MAJOR meltdowns.  The process of change is slow going usually, but I feel like we're getting better at helping Franklin work through the anxiety of change and helping him see the excitement in new things.  He's never been a very apprehensive kid, he just likes to know what is happening all the time.  He doesn't like the unknown.  I feel like this is a situation in which we had success and I feel like the sudden change in color without a meltdown was HUGE progress.  So while getting a new car may not seem like a big, scary change to normally developing people, this kind of change can be a HUGE deal to a person with Autism.  I feel like David and I helped Franklin handle this change with success and for that I am pretty pleased :).

Friends

Since before Franklin was out of school for the summer, I started to worry about him and his social interactions once he was out on vacation.  We always struggle because Franklin  always seeks out adults to play with him instead of other chi
Before I get into this post, let me first give you a little background information.  Franklin is a very social little guy, he loves talking to people and he wants constant attention. We always struggle because Franklin  always seeks out adults to play with him instead of other children, and when he does seek out other children, it usually doesn't turn out the way we hope it would.  He wants someone who will do EXACTLY what he wants to do in the exact way he wants it done.  This can get very tiring for the person playing with him.  Franklin also moves very quickly and wants to move from one activity to the next very quickly, which can also be exhausting trying to keep up with his constant movement and constant change of activities.  Franklin can also get aggressive if he feels like the person is not doing what he wants him or her to do.  We struggle with Franklin understanding social cues when playing with others.
In the past, we have tried to set up playdates or go to the park so he can play with other kids his age but after one or two playdates,  parents would politely decline further playdates or they would flat out tell me that their children could no longer play with Franklin.  In a way I don't blame them, it's hard to explain Autism to other children, it's a hard thing for adults to understand.  And I can understand parents being hesitant about letting their children play with a child who can be aggressive.  It still breaks my heart though.  I know how badly Franklin wants friends, and I know he gets lonely.  For Franklin, that social interaction is SO important, because it provides opportunities for him to learn the appropriate social cues and forge meaningful friendships.  It really hurts when other kids do not want to play with him, and it hurts even more when their parents won't let them play.  I feel like I constantly have to apologize for Franklin to other parents, explain that he has Autism, and yet, while some people are understanding, other people are downright rude.  Franklin LOVES to play at the park, he would live outside if he could.  Taking him to the park though, is highly stressful for me because every time we go, Franklin gets aggressive with other children.  It's not an aggression to be mean, it's because he desperately wants to play with the kids, but he doesn't understand "cooperative" play.  He wants the other kids to do EXACTLY what he wants them to do, how he wants them to do it, and when he wants them to do it.    In addition, if  a child does not play with him, he pulls on that child and says, "play with me! play with me!"  About a week ago, he sat on top of a child who was younger than him and the mother flipped out on me.  Again, I don't blame her, but even after I explained she still strongly suggested to me that I just keep my child at home and not bring him to the park.
Playing with other children requires a lot of practice for Franklin.  Practice with asking someone to play, practice with suggesting activities, practice with turn taking, practice with everything that is automatically engrained in normally developing children.  It is tiring but when your child FINALLY gets it, it's a huge victory.  I will never forget, about a year ago, we had been practicing saying, "Hi my name is Franklin, will you play with me?"  We practiced this OVER AND OVER AND OVER again and finally we were at an event with several children and Franklin went over to a little boy and said, "Hi my name is Franklin, will you play with me?"  I was heartbroken when the boy declined.  Franklin tried again later, and the boy declined.  Over and over again, the boy declined.  It absolutely broke my heart, and it was a HUGE setback because he was trying so hard and it was not working for him.  I talked to the parent,  and explained that this was a huge breakthrough and could he please do something to encourage his son to at least play for a little while?  He refused.  Since then, we've been really struggling with teaching him that sometimes, even when he asks nicely, the child might still decline, that we cannot force it.  We have struggled so much with playing with normally developing children that we were so grateful when we found our Autism support club.  There are several boys in the club who are Franklin's age and high functioning.  In the last several weeks we have started setting up playdates with the other Autistic boys and it has been wonderful because the boys are learning together!   I still find myself, though, apologizing for Franklin's behavior, I think it's just what I have done for so long and I feel terrible when he hurts another child.  The difference has been that the other parents are in the exact same boat, and we are all more understanding of our children.  We all understand the great importance of our kids having social interactions and learning.  It is also important for us, as parents, to feel like we are accepted by other parents, to have a group that understands.
I do wish that Franklin could play with non Autistic children, that he would be accepted by them and by their parents.  We have decided that sticking with "our own kind" as I call it is way less stressful.  The rejection is hard on all of us and belonging to a group that truly understands has been the best therapy we can ask for.  We're always going to have to deal with social issues with other kids and their parents, and I hope things will get easier in the future.  For now, though, we are very happy we found our fellow Autism families, and am glad that we have chosen to stick together with them.

Stimming

Lately I've been getting a lot of questions about "stimming" or what it means when I talk about Franklin's "stim" words.  The term "stimming" is short for "self stimulating behavior" and it is very common in people with Autism.  Stimming usually refers to a set of specific behaviors such as flapping, rocking, spinning, or repeating specific words, phrases, or sounds.  These behaviors have a calming effect on the person and are usually done in a situation of excitement, anxiety, or overstimulation.    Until a few months ago, I didn't know what stimming was either.  Over the last year Franklin's Autism has become more severe and he began to develop a number of different "stims."  It started out with him flapping his hands, then he started to twitch his eye, then he would open and close his mouth, then it progressed to making strange sounds.  When it first started it really worried me, I got upset and rushed him to the doctor.  We scheduled neurological tests for him because I thought it was a "tic" and I wanted it to stop.  As time went on, Franklin started stimming more and more.  We started seeing Dr. M and she explained to David and I about stimming.
Most of Franklin's stimming is in the form of sounds that sooth him.  He has a little song he will hum, or he will say things like, "chung, booljong, and shelwee."  He also finds the "ch" sound soothing so a lot of times he will change words so that they contain the "ch" sound.  Many times stimming behaviors are not considered socially acceptable because they are oftentimes strange or different from what a neurotypical person would do.
There are two schools of thought when it comes to stimming.  The first is that people with Autism need to learn other behaviors that are more socially acceptable to replace the "stims" or be given medication to make them go away.  The second is that the stims need to be ignored because the stimming is soothing to the person and instead of trying to change the behavior, more awareness needs to happen.
I am in the second camp.  I really feel like my son is who he is.  That God made him the way that he is for a reason.  I am slowly coming to acceptance that he is going to be different and that if the stimming helps him, then why not let him do it!  It's not hurting anyone, and in fact, forcing him to stop WOULD hurt him!  I am of the mind that if it helps us avoid a meltdown, it's a good thing.   It really makes me crazy when people tell Franklin to "stop that" or ask "why is he doing that?"  I've even overheard comments from other kids' parents like, "that's so weird."  It hurts, and of course I want my son to be loved and accepted by everyone, that's what every parent wants.  But I want him loved and accepted AS HE IS.  I don't understand why he should need to change who he is, and what he does, in order for people to accept him.  I do have concerns for when he gets into those years where kids make fun of each other.  Kids can be cruel, and I feel that for now, he is sheltered from it.  I am not sure what we will do when that time comes, but I feel like stifling who he is and what he does to calm himself is not the answer.