Throw the Book at It....

I'll be the first to admit that I'm an obsessive researcher. It gives me a sense of control when things are unknown or out of control. In fact, I'm  SUCH an obsessive researcher, that sometimes when I google things, every useful link is already highlighted in purple because I've already read it. (usually doesn't even stop me from reading it again...) Anyway.... whenever anyone recommends a book on autism, aspergers, ADHD, etc, I usually track it down and read it cover to cover in a matter of days, sometimes hours. I can't get enough information!

Now, some of these books have been downright awful. The autism parent community raves about this one book, for instance, "The Reason I Jump", which was written by a 13-year-old nonverbal boy with autism. I hated it....didn't find it useful...and I didn't see what all the fuss was about. Maybe it was more helpful for others... I don't know. 

Anyway, I wanted to share a list of books that I've read and re-read over the last couple of years. They are the ones I have found most helpful, interesting and well-written. 

Quirky Kids: By far my favorite. I wish someone had handed this book to me when B was three years old. Heck, I wish someone had handed this book to my mom when *I* was three years old. (it wasn't written yet... but that's beside the point.) First off, the stories told by the parents in it held SO many "ah-ha! That's a thing!!!" moments for me....  I saw all my kids and myself within these pages. It gives a great overview of ASD, sensory issues and their challenges. Also has some very helpful information on where to turn for help and if you have questions or concerns about your children --  the different public options (Infants & Toddlers programs, for example, which I knew nothing about when B was little, but wish I had), private options for evaluations, what evaluations entail, therapies, etc.  Also emphasizes that sometimes? Quirky really is just quirky, nothing else... and quirky is a-ok. ;)

I picked this one up at the library one day along with a whole stack of books on Asperger's Syndrome. It ended up being the only book that was worth anything from that pile! Like every other Chicken Soup book, this is a collection of positive essays written by parents with children on the autism spectrum. Some essays are more relatable, depending on where your child falls on the spectrum, but it's a great, quick, uplifting read. 

This one I have read about a hundred times over the last 20 years. It's a great book. Good, solid information written by an expert on the topic of AD(H)D .  

This I picked up at the library during another trip along with yet another giant pile of terrible written books about ASD. THIS book, however, is fantastic. It's funny, well-written and has great insights by the author, who didn't figure out until he was an adult that he had Asperger's.  I even convinced my husband to read this one! (we had a great time discussing it.... this is a whole other post. LOL!)

This one was recommended to me by J's  I&T teacher way early on. As soon as I started reading it I immediately recognized completely accurate descriptions of my oldest and youngest sons,  who are at opposite extremes of sensory processing issues. This is another book I wish someone had handed me eight years ago. (!!!!)

This is a companion book to the one above. TONS of great activities to help regulate kids with sensory needs. Here's the kicker... the first time I read through this book, I realized it had SO much in common with a book called "The Mother's Almanac", which is a book my mom always had around when I was little. It was originally published in 1975.... back then, these were activities for ALL kids....The whole thing made me realize that these activities, outside of maybe preschools, are often not common sense, go-to kid activities any longer.... rope ladders, balls, bubbles,  balance beams, obstacle courses,  beanbags....  they are such easy, simple things... and so many have fallen by the wayside for more complicated, often electronic alternatives. (definitely guilty here!)  Anyway, worth a read for lots of parents! Not even just parents with kids who have SPD!

Whether you have ASD kids or not, Temple Grandin is just flat-out fascinating. (If you haven't watched her movie, I think it's on Netflix. Check it out!)  In the book, She gives great insights into what it's like to to have an autistic brain.  Just really, really, good, interesting stuff. You can also look up her interviews on YouTube.  Her story is amazing! 

I'll try to add to this list in the future... always looking for new good reads! If you have a book to recommend, leave a comment! I'd love to check it out! 

School Triage....

Anyone with more than one child will attest to how you sort of auto-prioritize them at any given time according to who needs the most help/attention/whatever.... it changes yearly... monthly... weekly... sometimes even daily. LOL. Always reassessing....

Until, two days ago, the current triage order in our house was:
S - 2nd grade
J-   Pre-K 4
B - 5th grade

B spent most of last year cruising through 4th grade. We had virtually no hiccups... I didn't have any conferences with teachers that were outside of the regularly schedule fall conference. We had one team meeting where the teachers spent the entire half hour telling me how well he was doing.  (every parent should be the recipient of this wonderful gift at least once in their child's school career... it was so uplifting to hear all this after our initial team the year prior....)

J, was having his morning freakouts and occasional behavior issues at preschool....and definitely some worrisome issues I had to stay on top of with regard to relating to other children.

S, on the other hand, while steadily progressing, but still very much playing catch-up in first grade and needed constant vigilance with homework and conferences and strategizing with his teacher....

So that's where we started the school year....

I had an early conference with S's second grade teacher and she was having no issues with his work! I have checked in a couple more times via email and all is just cruising along really well. The work coming home is AMAZING to see given where he started last year. He brought home a writing assignment just yesterday that was so well done, I emailed the teacher to ask how much help he had. When she told me virtually none, I almost cried. He has turned a corner. He is actually LOVING school this year and motivated to do great work. It's wonderful to see the transformation that has come with more confidence. His favorite thing to say these days when he starts his homework is, "This is WAY too easy. I need harder work." This is not actually true... his work is perfectly appropriate for him right now.... but it's a testament to how far he has come... that he feels good enough about himself and his abilities to say this!

J is having such a good year I still can't even believe it. He skips into his classroom every day after giving me a huge hug and kiss. He loves his class and his teacher and going to school!  He's participating and enjoying the activities. We still have some issues with him not really playing WITH other children, but we're working on that.... but we're past the REALLY hard stuff, I think, so things are great for him right now.

B.... I thought all was going so well. Then he lost his binder. Then he lost his spelling homework. Then he had a breakdown about how bad he was feeling about himself and his inability to organize and stay on top of things. He's also got some serious anxiety going on about middle school and some upcoming fifth grade things like the Patriot Project and ballroom dancing. After virtually no contact with his teachers this year, I finally broke down and emailed them as a group. I want him to be becoming more independent in preparation for middle school... but he STILL needs some supports to get there. One teacher of the four wrote me back and is going to help him get his things together.... it's hard to convince teachers your child needs help when they are doing reasonably well academically... but I've been watching his homework grades drop on the new online grade book (not sure if it's a good or bad thing that I have access to this) and it's worrisome. Plus, he's SO upset.  Hoping to get him back on track with some tools and some simplification of his school organization. I don't think it's huge... just a hiccup. He lost some of his confidence though and we need to work on building him back up a little.... so just like that, he rocketed to the top of the list.

Anyway, so that's where we are. Who knows who will move to the top of the list next. It usually happens unexpectedly... LOL. I feel like what I've learned is that you can never let your guard down and assume if everything is okay, that it will stay okay.... you have to stay prepared to advocate for your child and get them what they need. NO ONE else knows your child like you do and no one is going to step up and do it for you... not their pediatrician... not their teachers... no matter how good or well-intentioned... it's up to you to make sure they get what they need, tell others what they need, or, if they are old enough, help THEM recognize and verbalize to others what they need.   :o)

My Fear....

I realized recently that for the last 2-1/2 years, since we started figuring out things with J, (or even possibly much longer) I've spent a LOT of time mentally on the defensive.

For a decade, I've had the kids in the family who are different.... when everyone else's children are happy to see people and readily say hello and give hugs, with mine, you never quite know what you'll get.  Sometimes my youngest even hits and kicks my husband's mother. Way to win points with grandma there, J. She already thinks we're giant parental screw-ups, so that should seal the deal.

For a decade, I've had the kids at school who don't quite fit... when everyone else made friends who they have sleepovers with or spur of the moment playdates, mine have found it difficult to move beyond just "see them at school" friends and none of them, except maybe the oldest just NOW at age 10, have what I would call a true friend right now.

For a decade, I've had the kids whose behavior sometimes makes it seem like I haven't bothered to teach them basic manners. Despite constant reminders, they often don't remember to acknowledge someone when they walk in a room. They have to be reminded to say hello to people who speak to them. Our middle one right now, at 7, can barely speak to anyone for more than half a second without turning his head away and speaking to the wall, if he speaks at all.

I absolutely adore my children the way they are and I understand them.... but it's hard sometimes to see other kids who do all the above things at a typical age and in a typical way just having picked them up from living and breathing and being out in the world.  I worry there are people who won't take the time to see past the fact that one of my kids might scowl at them when they say hello long enough to see who they really are -- funny, sweet, kind, interesting, and smart little people.

I try to stop my thought process when it starts sentences with "I wish they were..." or "Why can't they just be like..." It's wrong. They are who they are and they do things in their own time and I KNOW that and I've LIVED that. But as a mom, it's hard to watch them be the kids who are sometimes challenging for other people to readily like or understand. (right now, I am thinking mainly of the younger two.... B has always seemed to endear himself to people even if he drives them kind of insane sometimes)

So I feel like I spend a lot of time on guard and ready to defend both them and myself from criticism, verbalized or not, real, or imagined. I want to shout from rooftops, "You don't understand.... it's an autism thing! It's an ADHD thing! It's an anxiety thing."

But then it all feels like an excuse --- which brings me to something else I've recently realized.... that for a couple years now, I've been holding my breath with each provider visit, evaluation, and team.... waiting for someone to say  "Oops! Well, we thought it was ASD, but we were wrong! It's actually your fault.  Turns out, he's just REALLY bad. Sorry about that. Good luck!" Sometimes even I feel like it looks that way... that it's "user error", so to speak....

And sometimes I wonder if it IS my fault.... where did I go wrong? Am I not consistent enough? Was I too lenient and hands off with J because he was my third? Did I not do a good enough job exposing them to things when they were babies?  I feel like I did... but what if I didn't?  What could I have changed? Was I bad example to them? Did we not have enough people over? Did I not get out of the house enough to show them what it means to be social? Would things be different if B had gotten all the help J did? Would it have put us on a better, easier path? Were they really just born exactly the people there are and I couldn't have done much to change it, even armed with all the information and early intervention at my disposal?

It hasn't helped that there has always been some disagreement on the part of the people who work with J whether there really is any problem. Talk about frustrating. Nothing will make you second guess yourself more than an adult professional with a psychology degree telling you they don't see an issue... even when three other ones say they do.  I know what my gut says and I know whose opinions I trust the most.... but still.... really? The rest of you don't see it? How?

I've read and read and read until I can't read another word about discipline, and parenting boys, autism, ADHD, anxiety. I know all the right things to do. This SHOULD be working. I look at other parents and sometimes feel like they make it look easy....so  why is it so hard for me?

I don't have answers.... only questions.... so many questions.  Nature... nurture... both?

I'm tired. And beaten down. And did I mention, tired? :(  I think I've changed one too many pairs of poopy underwear this week...

It's Complicated.....

So, our middle son, S....

As I have said before, I worry about him more than the other two. Though things improved academically last year with a better understanding of his issues, some school interventions, and medication for ADHD, there was still something OFF that could not be explained by straight-forward ADHD. 

At the risk of looking like paranoid diagnosis-acronym-collecting parents, we made an appointment for him this summer with the same psychologist who saw B and J.  My husband and I had talked at length about it and felt like certain things were getting worse and also that we just needed SOME way to explain some of his more perplexing behavior to his teachers and find some solutions to deal with it at home and at school.  Teachers saw it too, so we had lots of support.

A big problem is that he lacks facial expressions in most situations.  Ironic, seeing as how he has always been my biggest ham for the camera. He can turn on a perfect photo smile like nobody's business. But at school or in chaotic situations, his expression is completely flat. Teachers do not know what to do with this, as they tend to think one or all of three things 1) He has no idea what is going on.  2) He doesn't care what's going on.  3) He's unhappy.  In reality, these are true very rarely.  People are always surprised to hear that he's a really content, happy kid at home! 

The testing showed pretty significant deficits in his ability to interpret facial expression and exhibit appropriate expressions of his own. In one test, he couldn't even match different faces that had the same expression.  

Like J, he also has problems with reciprocal conversation and also in understanding how to respond in a social situation... like a friend's subtle request to play. In one test, the psychologist had him playing Legos and made some different hints that she would like to play too, all of which he completely ignored. Then when she finally said, "I want to play Legos TOO!", he scooped up some of the ones he wasn't using, handed them to her and went back to what he was building. 

He also doesn't yet understand social greetings.... saying hello when you enter a room, goodbye when you leave, looking at people when you speak to them.  He also has a really hard time making eye contact, even when reminded. All of these were noted during the testing. 

The good news is that these are ALL things that he can be taught even if they don't come naturally. So that's what we'll be working on and will be cluing his teacher in on how to do the same. 

Yes, he technically ALSO now has a diagnosis of ASD;  BUT, the psychologist cautioned us to take that information with a grain of salt. 

First, it's very mild.  Second, the diagnostic criteria have recently changed to allow it to be diagnosed based on history not current symptoms, which encompasses WAY more people than it ever used to.  She isn't thrilled about that.  

I see positives to it this hough. While I likely will NOT share S's specific diagnosis with school, just knowing the causes of his struggles are in the ASD ballpark helps us understand better how to help and explain to others how to help. So I'm very much okay with it -- way more okay than constantly thinking that there is something up with my child that I just can't put my finger on and don't know how to help him with. 

So that's where we are going into a new school year.  Hoping all this information help us give him a great second grade year and that things really start to come together for him. 

So Long Infants & Toddlers.....

We had J's initial IEP meeting yesterday. With a dozen or so signatures, give or take a few, I officially ended our time with Infants & Toddlers (as of his birthday).  Bittersweet, for sure. The last two years have been quite the ride that has taught us so much and brought some wonderful people into our lives.

This was not my first time around the block with a team since all three kids have them. But it was kind of a particularly nerve-wracking one for me, more so than I thought it would be, because it was building the framework for all services going forward into kindergarten.

The more I thought about it later, I realized I was also on edge because this was my chance to make sure J didn't fall through the cracks in the same way his brothers did until we caught on to the fact that our concerns were actually legit and we could ask for things from the school system.  This was our chance to really get it right from the very beginning.

It went well. We mostly got everything we wanted. He gets to stay with his county playgroup all next school year, which will focus on the pragmatic speech weaknesses and appropriate play and social skills.  He also gets visits at his regular preschool from his Play N Learn teacher, which is fabulous. It wasn't supposed to be her as our preschool is not one of the ones in her territory, but we asked if it was possible. Thankfully, she also thought it was important for consistency, so pushed it through. THRILLED about that.

The only thing we didn't get, which I may revisit in the near future, is OT services. They gave us monitoring. OT monitoring is kind of joke. That was what S got in kindergarten when I kept saying, "Something is wrong. He CAN'T write letters." Monitoring resulted in the OT popping her head in every so often. looking over his shoulder and saying, "Yeah. Hrm. Let's just wait and see."  Of course, we lost an entire year and played catchup last year after his diagnosis.

After that, "wait and see"does not fly with me anymore.  You know what "wait and see" means? It means they have a busy schedule with other kids whose problems seem more immediate or whose parents are squeakier wheels.

Yeah. NO.  In fairness, they did agree to up the monitoring frequency. So that's something.

The team tried to tell me that I can't expect a child of J's age, gender, activity level, and likely future ADHD diagnosis to sit down and try to imitate letters or draw a line or a circle. That I should just take him to playgrounds and Little Gym instead.

Yes. Thanks. I get this. Play is the thing for this age. And we do TONS of this. But I want that OT stuff in place for when it IS age appropriate for him to sit down and learn to write and ends up struggling with it. It's possible he won't.... but some of the testing points to the likelihood that he will.  And I am NOT letting him lose an entire year like his brother did just because OT's schedule is too full.

Anyway, so I'll be bringing that back up again in future months.....

I also asked for speech, knowing we probably wouldn't get it. The speech help he needs is all conversational, which is what the regular teacher works on at group and when she visits preschool. It was one of those "let's just ask and see what happens" things. They shot that down pretty quickly.

Those people are really good and well-practiced at shooting you down. :\

All in all though, a successful meeting. Glad to have it out of the way! From here on out, we deal with our home school, which is all the familiar people we have teams with for the other two boys.  They know us well. I am so THRILLED about this. :)  Should make things much easier and less nerve-wracking going forward.

Looking Through The Autism Glasses....

ASD in its high-functioning form, can be very hard to see for those who don't know much about it and only think of autism in the way it is often portrayed in the media.  Once someone points out the more subtle signs of it you though and you really start to understand it, you really can't NOT see it.

For my husband and me, it took awhile to mentally move past the idea of "these are just some kind of random weird things our kid does" to understanding it was all part of a much bigger picture.... to see it for what it probably was.

And as that happened, as the early intervention teacher would point things out to me that were starting to add up and I began to see my son differently, it made me so sad.  I once referred to it as seeing him through "autism glasses" all the time. The idea that he might be on the spectrum caught us so far off guard way back then.

Though I wasn't totally uneducated on the topic, up until that point I hadn't even considered ASD was what might behind his speech delay and other atypical behavior.  (and, actually, hadn't even considered most of what they were saying was atypical was even atypical!) But then, suddenly everything he did made me see it... everywhere... all the time.

It's been 2-1/2 years since then and we've all come a long way. We have learned so much and also realized in that time that we''ve been likely living with and dealing with ASD for much longer than we realized because J has so much in common with his oldest brother.  And guess what? Nothing was different. B was still B... J was still J. I realized I don't always have to see them through those glasses.

Some days though, they are forced upon me when I'm not expecting it.

Today, we took the three boys to the aquarium. I quickly realized J was overwhelmed by the darkness and the crowd and the noise. I cringed as I noticed his favorite things were not the fish, but instead the signs, the escalators, the revolving door leading to the rainforest, and the elevator we didn't ride but that he talked about for ten minutes after we passed it.  When we weren't riding an escalator, he just kept saying he wanted to leave... "it's too dark.... it's too loud.... i don't want to be here." He was calm about it, but very anxious. I know he was nervous about the darkness because it reminded him of a movie theater and he is scared to death of movies. We don't know why he is afraid of movies....it's just one of those things. If he even hears the HINT of the beginning of a movie on television, he cries and hides.

I made the choice to keep the glasses on when we walked outside.... trying to see how he was interacting differently than others with the world around him.  I watched as he held his ears when loud motorcycles flew by. He did it again when my husband played a little xylophone in the park we stopped to play in on the way to the car.

It's hard for me NOT to look at this photo and see autism... which is part of the reason I stopped to take it.  On the days when people make me feel a little crazy for getting intervention for him, I can look at this and remember that this is real.

However, THIS is also real.

Much of the time, he's just a pretty typical, fun, silly little boy who is first and foremost, our J ... NOT ASD.

Autism is part of our lives as a family, but it's not everything.

It's part of who our boys are, but does not define them.

There is a lot related to ASD that I wish I could change for my kids  -- the social struggles,  the anxieties.... I wish I could watch them with peers and not have to hope they act "normal" enough to not get made fun of.... or trust that J won't freak out on another child because they play with a toy the "wrong" way.

But there is also a lot I wouldn't change.  Their uniqueness, their passions, their innocence and lack of "street smarts" relative to that or their typical peers, or the amazingly interesting ways they see things, are just a few.

I'm just happy I've learned to take the glasses off once in awhile. :)

I met a new mom at J's group. Since it's summer, all the older siblings tag along. I have B and S with me and she brings her five-year-old. From the very first time he opened his mouth, he reminded me of B as a younger child. I absolutely love listening to him talk because it's like hearing little B again. :)

He talks at length about space and science and anatomy. He says things like "I'm feeling curious!" and just phrases things in the funniest ways and uses huge words. His mom and I have talked a lot and she said she likes seeing B and hearing how things played out because she always wonders how M will change as he gets older.

Her son has more behavior issues than B did. He is kind of a handful, to be honest and actually, I'm wondering if I'm looking at a picture of what J will be like right before Kindergarten.  He is is very, VERY loud, impulsive and just all over the place. If I didn't have a child(ren) kind of like him, I'm sure I would be thinking, "Why can't the mom get him under control?" Instead, I can say, "Yeah. I get it!" and help her keep him occupied while we wait for the little brothers to be finished with group. ;)

She said he has an aide in Pre-K for part of the day and will in kindergarten next year.... and that he does really wonderfully with activities that are part of his interests and then the behavior issues come in when it's something he doesn't want to do. I hope to keep in touch with her after summer because I'm interested to hear how he does in K next year. He's such a neat kid.

Part of what has been wonderful about having J involved in this group and with early intervention in general is just meeting other parents who GET my kids and whose kids have some of the same quirks and challenges. :) Prior to this, I had never really met anyone who had kids anything like mine. I thought I just had really, really hard kids.  ASD gave us name for the challenges and connected us with a whole world of people who understand.  It's really, REALLY nice. :)

Quirk 996 of 1,001.....

One of J's "things" is that I can't yell at him. Anything stated in a loud, authoritative tone and with  exclamatory language like "Don't DO THAT!!!" or "Stop it RIGHT NOW!",  or even a facial expression that shows anger causes him to melt down and things to spiral out of control. That's when he resorts to hitting and other physical behavior. Whereas, if I deal with the behavior calmly, it resolves very quickly and with very little battle of wills or escalating behavior.

This is not to say I don't discipline him. I have just had to learn new ways to do it. My face and tone have to be calm.  Neither conveys approval of the bad behavior, they just have to be even and calm.  It has been an exercise in patience for me! I try to remain expressionless but speak at a regular volume. Try doing that when your three-year-old is trying your patience for the millionth time in a day! Not easy...but it  really makes a difference with him.

Anyway, so this is something I caught onto a long time ago with J and started implementing.

Yesterday, I was talking to a friend who works with ASD kids as part of her job as team chair at a county school and she was telling me about a 4th grader who has this very same issue! They've actually had to train the teachers how to manage his behavior with calm facial expressions and tone because loud, authoritative discipline is one of his triggers. Who knew this was even a thing?  I just thought it was a weird thing unique to J!

Definitely something I will be cluing teachers into over the next couple of years... I think giving them this knowledge may nip a lot of potential behavior issues in the bud.  Hm.....

To Adderall or Not to Adderall?

My two oldest children take Adderall.  I'm still not in a place where I'm thrilled about that fact or particularly like a lot people knowing that... there is such a stigma to it. But it is what it is.

My husband, who was diagnosed with ADHD at the same age our oldest son was, was staunchly anti-medication, as was I. Both of us can admit to having uttered the words, "We will NEVER put a child of ours on medication."  Well, we all know what happens when you utter those "We will NEVER" sentences as parents.

Anyway, so after lots of trial and error, mostly error, we reached the point with B where his schoolwork was suffering, his teachers were pulling their hair out, and we were frustrated because we knew how well he COULD do, if only he could focus. He was never a "behavior issue" per se, but he was, to put it quite frankly, super annoying when he was at his worst (ridiculously impulsive, fidgety... just EVERYWHERE). He also couldn't focus well enough to finish classwork.  Adderall turned out to be the answer.  It had exactly ZERO negative side effects and exactly 101 positive ones. His schoolwork turned around almost instantly. He nows gets As (with an occasional B) in GT classes without issue. Adderall didn't fix all of his organizational issues, but those have improved with time, maturity and good habits. The medication just allowed him to tune out the distractions and calm his thoughts. 

We reached the medication point quite quickly with S, after seeing how well it worked for B. He is not hyper like B, nor is he impulsive, but he does zone out and when he does, it's BAD and he can't accomplish a single thing.  The medication hasn't made QUITE as striking a difference, as S's issues are deeper than just not being able to focus. But it did help.... the ability to focus was enough to help him get caught up to a good place in school. 

There is no question that I would never send either one of them to school without at this point.  However, on the weekends, I usually don't give it, because I feel like a break from it is good and their ADHD-related issues do not really come into play all that much at home.  There is not much they really HAVE to focus on on the weekends and I really don't mind B's hyperactivity.  

But now... it's summer.  Last year, it was a no-brainer. B was the only one taking it and I didn't give it to him at all. This year, I have experimented with not giving it to either one and it is blowing up in my face.  

S is doing swim team this year, which requires daily practices. The kids have to listen to the coach's direction and just DO it. Without the medication (which I didn't give at all until today's practice), he bobs aimlessly around and just generally looks like is mentally somewhere else.... completely oblivious to what the other kids are doing and what he is supposed to be doing. It's REALLY hard to watch as a parent. He is frustrating the heck out of the coach too. I finally broke down this morning and gave him the medicine and he followed all directions and stayed mentally with the coach for the majority of the practice. Hard to argue with the efficacy there.

B, on the other hand, doesn't really need the medication to focus on practice. He loves swimming, so he naturally focuses reasonably well and the fact that it's constant movement anyway eliminates most of the focus issues.  However.... out of the pool is a different story. His impulsivity is off the charts. Today after swim practice, he led a near riot at the pancake bar. It was mortifying. He gets SO carried away and I have to get down on my knees and hold him by the shoulders to get him to calm down. He has been known to do completely insane things like dump cups of ice cream on his head or trash entire rooms when he gets really wound up. At his least destructive, he runs around in circles flapping his arms like a bird. This does NOT happen on the medication. 

SO I think for this summer, most days are going to be medication days for one or the other or both.... especially for the duration of swim team season.  

I didn't ever really foresee it being that way, but I try to remind myself it's like putting glasses on them.... just improves what they already have going for them. 

It's tough though. These decisions. Really tough. But in the end, you do what works, I guess.... right? 

Sigh.

Dear Swim Coach....

Dear Swim Team Coach,

I love that you don't run the swim team like the tiny, perpetually losing, mostly-just-for-fun country club swim team that it is. It's why we keep coming back. You took my fearful, anxious son and turned him into a swimmer and gave him the gift of a sport that, with the right encouragement, he just might do for the rest of his life.

However, it has been a full year since he last swam in a meet. So when he showed up yesterday for the first meet of the season, a mess of tears and anxiety, and I brought him to your office, I had really hoped you would give him a little more than just a dismissive, "You won't die." I just wanted you to listen to him for a minute. Give him a pep talk. I'm a little disappointed in you.

I know you were busy getting things set up for the swim meet, and I know you don't pander to crying kids...  it's part of what made this all work for B last year.  He needs to be pushed and he needs people to not play into his tears and his fears. I love that you made him swim butterfly last year as a new swimmer and didn't let him back out. I love that when he said he didn't want to to relays, you said "Oh well. You're doing relays!"

But what he really needed yesterday was to be reminded by someone whose opinion means something (a.k.a. not mom and dad) that he could DO this. That he already DID do this. That you needed him to get it together and play his part on the team because he's important.  It would have taken you all of two minutes and would have made a world of difference.

I keep reminding myself that you are young... that you don't have your own kids and definitely don't at ALL understand kids like mine.  I just wish I could make you understand just how much it has taken to get him where he is now....  how much he overcame just to get in that water last year, much less race. To you, I know he looks like a kid who needs to "man up" and be less crybaby about the whole thing. You just see he's a good swimmer with a ton of potential and you don't get why he'd have so much anxiety about it. Nope. You don't get it at all.

I'm not going to waste my time trying to make you get it either.  That in itself will be a life lesson for B. Not everyone he encounters in life will understand where he is coming from or the battles he fights with his own mind. Mom can't always follow behind him explaining to people that he has sensory issues, an anxiety disorder, and ADHD. Unlike school, life doesn't give out IEPs and 504 plans.

You are a good coach, I just wish you would take a little time to get in the heads of some of the kids more. It's not just B, they all could use a little more individual attention and encouragement.  These aren't the college swimmers you coach the rest of the year. Just a few well-timed encouraging words here and there could make the difference whether or not they stick with this sport you love so much.

Sincerely,
The Mom With the Crying 10-year-old

A Year of Difference....

When my middle son started first grade this year, he could barely form letters. At a conference just after the beginning of school, his teacher put a paper in front of me, a math test, it contained pages of scribbles with some random legible numbers scattered throughout. She gently said, "I'm just.... not even sure how to grade this."

This conference was  no surprise at all. In fact, it was a HUGE relief that his teacher saw everything I had been seeing. I had been saying for a year to anyone who would listen that there was a problem-- That my son couldn't make letters well or in some cases, at ALL.  That he wasn't producing any real work.... that his skills had stagnated during the kindergarten year. 

In kindergarten though, (in my experience, anyway) unless your child comes in with an IEP or shows a very, VERY obvious MAJOR issue, it's so much a "wait and see" game because the kids come in at so many different levels anyway and some kids are just late bloomers. So we waited and saw.... and things didn't get any better.  In hindsight, I should have been a squeakier wheel that year... insisted on more OT consults, requested a team, gotten him evaluated back then on my own. I knew there were problems and my gut has never been wrong any of my boys' issues. When will I learn to just go with it?

So I sent him off to first grade in August and quietly waited for the other shoe to drop, which it did about three weeks into school with that first conference.  After that and a subsequent evaluation in which we learned he has processing deficits that affect his writing, we basically started from scratch. He got pull-out help with the resource teacher to help him learn to write out whole words and eventually sentences and longer sentences. We worked tirelessly at home on his homework working on correctly forming letters and developing strategies to keep him on task and not get too frustrated at this skill which does NOT come easily for him. We erased, we started over... we practiced, practiced, practiced. His teacher had him redo things when they weren't his best work... she pushed him, which is what he very much needed.  

I am happy to say that writing is finally something that doesn't completely overwhelm him. He doesn't have to think through every stroke of every letter. The amount of progress S made this year is amazing.  I had a conference with his teacher last week and he is caught up to where he needs to be and ready for second grade.  Interestingly, now that he is writing more, we have learned he he is a pretty great speller, which I didn't really expect!

As I was leaving, his teacher said to me, "I really want you bring him back to visit in ten years or so because I just can't wait to see what he ends up doing because I know it's going to be something really interesting and amazing!" Isn't it wonderful that a teacher can start out a year with a student who produces the kind of work you see in the top picture and still manages to see the kind of potential that those deficits are masking?  I love that.

When I am deciding which pieces of my boys' schoolwork to save, I try to only keep work that shows measurable progress or mastery of some new skill (well, and anything sentimental or that starts "Dear Mommy...." ;)   Needless to say, his "keep" pile this year is pretty big. :o) I am so proud of him!

Here's work that came home yesterday....

What a difference a school year makes! 

I thought swim team practice started TOMORROW. I learned last night that it actually starts today. I was dreading telling B. He was (mostly) mentally prepared for tomorrow and the unexpected news was NOT going to over well, though I hoped to be pleasantly surprised.

A little background -- B LOVES swimming these days. Up until about two years ago though, he actually could barely do anything but doggie paddle and only in shallow water, and he most definitely would not go under water... couldn't stand any water on his face. Sensory issues and anxiety just got the better of him and we tried swim lessons three different times in the past with no success. Two years ago, deciding that an 8-year-old that couldn't swim was just getting a bit ridiculous, we found a wonderfully patient teacher who was a natural with kids like him and he made steady progress and breakthrough after breakthrough. Within months he was swimming free-style across the entire pool like he had been doing it for years.

Knowing our pool's swim team is pretty low-stress, but also that the daily practices and coaching were known to really move kids along, we suggested he give it a try last summer. It had to be his decision, and we had to move very slowly.... he did want to do it, but it took two weeks to get him to finish a whole practice, he cried and cried, but eventually he mustered the courage (once Tom gave the coach permission to just put him in the pool), and then he even competed in the last four meets of the season. The big surprise though was that once we got over the hump of his anxiety about deep water/cold water/swimming the length of the pool/practicing with kids his own age/this list goes on forever.... he turned out to be a natural!

By the end of the season, he had the basics of all four strokes down and was lightning fast in backstroke and freestyle. He even developed his own signature pre-race move when they would call his name, which was kind of hilarious. I don't think he ever swam a race without DQ'ing, but we never told him that. The progress alone was just amazing!

He got a whole fistful of ribbons (that he proudly displayed on his bulletin board over his desk) as well as the season's "Most Improved Swimmer" trophy. He still says the day he got that was the best day of his life.

The boost to his confidence that came from finding something he was REALLY good at was truly amazing. He had had a rocky school year with his anxiety, social stuff and learning to manage the ADHD -- we did multiple interventions including medication, and cognitive behavioral therapy; but I honestly credit swimming with really finishing the job of turning things around for him. Emotionally and socially he grew SO much over last summer. He has continued swimming lessons and fine-tuning his strokes all fall, winter, and spring in anticipation of this year's swim season. He works SO hard.

Still, his mind is his own worst enemy. He is already anxious about competing again, getting in the cold water, not being able to swim the length of the pool. I have to tiptoe around his anxieties, so as not to feed into them too much. It's a careful balance of letting him verbalize what he's worried about and not discounting those worries, but still convincing him to take a step back and remember that he LIKES swimming, and that he's pretty good at it!

So this morning, when I sprung on him that practice was tonight, he immediately burst into tears and said I had ruined his day. He started in on his list of why he was worried. I pointed to his big award from last year. "How did it make you feel to get this?"  "Really great...." he answered between sniffles. "But I can't swim the length of the pool anymore!"

"It's the first practice, most kids probably can't. No one is going to make fun of you for grabbing the lane line if you need it."

He is SO afraid of failing, of being made fun of, and of course, all the sensory stuff that still bothers him -- cold water, not being able to see the other side of the pool.

I am hoping he is okay with I pick him up from school, but I'm bracing myself for a battle on the way to the pool. I just wish he wouldn't regress like this! All that work we did last year and it ended on such a wonderful note and now I feel like we're back at square one, at least temporarily....

Anxiety never goes away. You learn to cope and to hide it (sometimes); but it never goes away. I feel so sorry for him. I totally get it because I'm the same way.  I wouldn't have wished it on him for anything.... but I guess it's a good thing that he has a parent who can totally understand his thought process. The bad news for him is that because I understand, I know he just needs to be pushed and not allowed to quit. I was often allowed to quit things that made me anxious... it makes things better in the moment, but not in the long run.   Poor kid... his mom knows too much. ;)

So here we go. Wish us luck! I'm hoping for another great season! :)

Still Here....

Hemming and hawing about what to do with J next year. Actually, no, I take that back, that's not really true....my decision is more or less made at this point,  unless a new option surfaces before our July IEP meeting.

So right now, I think we're just going to ask for county service providers to come to our current preschool and see him there. The other options would either require me to pull him out of our nearby preschool to do a county one, or supplement with a county one that would put him in school virtually all day every day and on a pretty ridiculously tight schedule at that. It's just too much, more than we need to add to our lives and more service than I think he needs, quite honestly.  And also, pulling him out of our regular preschool isn't an option. Nope. No way. I value the community and "family" there way too much. The county pre-k may have the upper hand when it comes to understanding, teaching, and engaging kids on the spectrum...and yes, that's huge... but they do not have the history with our family... and they aren't a group of people who have genuinely loved and cared for all my my children over the years. So if I can't have both, I choose the one that is "home".

It might not be the decision that will help close the social gap as quickly as possible, but I'm pretty sure it's the best decision for his emotional well-being and our family's stress level, both of which I feel strongly need to be taken into consideration. I also think that ultimately, he will be just fine.

Not gonna lie, it feels sort of wrong to turn down recommendations of his team... I am such a people pleaser and I tend to defer to experts, plus I really respect these people. I need to get over it though, because as well as some of them know him, and even though they have his best interests at heart,  I still know him best and know what will work for us. (still... SO hard for me to make this call!)

In other news, J is doing really great at summer camp! It's just basically an extra two weeks at his preschool, but nothing is the same other than that. He adjusted wonderfully to a new classroom, new teacher, and new kids, which astounded me. There hasn't been a single instance of crying at drop-off and he is having a blast! Seems maybe the new routine has done him a world of good!

Complicated....

Some days, I think I just want off the early intervention train. Sigh.  J looks so good these days, too good,  and I keep questioning what in the heck we are doing at this point besides taking a spot from another kid who needs the help way more. I also get so tired of explaining to people why we're doing what we're doing.

Summer is super complicated. Fall is looking even more so. Do I just want out? I think I might want out.

Edited to add: You know, I write this and hen I hear something like how he wouldn't eat his lunch at school the other day because I packed it in a different lunchbox. (we had left the regular one at school the day before) ARRGH....

I had a neat chance encounter with a second grade teacher at the boys' school this afternoon.

She had stopped to ask J what was he was playing on my iPhone and we joked about kids and technology....three-year-olds knowing how to text... that sort of thing.  I told her how J's infants and toddlers teacher once remarked how she sees all the time how these little ones often have all this dexterity to operate iPhones and iPads, but not the ability to do old-fashioned things like peg puzzles.   (in his defense, J can do both these days....  LOL... but you get the point...)

It was an off-handed comment, but after that, she ended up asking me why he was with I&T.

In my head I was thinking, "How much time do you have, lady?"

So I started with the short version, which I always give to people who I'm not sure are actually interested in talking about it. (because, like most parents in my shoes, I can talk at great length on this topic if you open the door....).  She kept asking me more and more questions, so I decided she must actually want to know, and I ended up giving her the long version.

She was FASCINATED.... talked about how she sees kids like him all the time in her classes who can't qualify for services because their social issues aren't "educationally impactful" (this is truth... we are VERY lucky J qualified!) She talked about how many times she has gone to bat for a kid she KNOWS is on the spectrum but no one else sees it and even parents are in denial. She said how great it was that he was getting help now and how much it will benefit him once he gets to elementary school.

(YES! Someone who gets it!)

And then? Get this... I gave my standard line about how yeah, hopefully all this intervention will prepare him well for elementary school  I'm sure he'll probably do fine once he gets there... yada yada yada....(I always say this because at this point in the conversation, usually people are looking at me with that expression that says: "What are you talking about? He's, like, talking and stuff,  and he LOOKS fine....and also, I would please like to end this conversation now because you have told me more than I really wanted to know in the first place.... " ) Then they usually nod and they smile and agree with me and we both go our separate ways or go back to awkwardly talking about the weather.

But do you want to know what she said to me?! Do you know?! Do you? Do you?! I know you do! (or should we just go back to talking about the weather? I'm not a great judge of these things...)

She said, "Well, but he might NOT do okay in all ways when he gets here...."

Hello, truth.  There you go. Just like that.

And without missing a beat, she went on to tell me about the kids she sees who struggle with the social stuff and what she tries to do to help when she notices that sort of thing in a child in her class.

(She REALLY gets it!)

We talked more about how struggles with peer interaction could be a big deal and yes, impact a child's education.  She said I actually gave her some great ideas for things to say when she goes to team meetings to help qualify these kids for services who wouldn't otherwise get them.

Did you hear that? I taught a teacher something!

(And also? SHE GETS IT!)

It was a great conversation that included lots more insights on her part that I can't really summarize here and not have this be a novel.

It's just always nice to talk to someone who has a genuine interest in a topic that has become a huge part of our lives. I'm so glad she was put in my path today!

Teacher Appreciation Week....

One looks back with appreciation to the brilliant teachers, but with gratitude to those who touched our human feelings. The curriculum is so much necessary raw material, but warmth is the vital element for the growing plant and for the soul of the child. -Carl Jung

It really should go without saying that I sincerely appreciate the HECK out of my kids' teachers... to the point where they probably get tired of hearing me say, "Thank you so much! You're awesome!"(I know that doesn't seem like something someone would get tired of hearing, but trust me, I can be super annoying) .

I've always held them in the highest regard,a lesson learned from watching my own mom with my teachers over the years; but when you have a child (or children) who needs extra help, you develop a whole new kind of admiration for all teachers do to make sure your kids don't fall through the cracks.

For my kids, it really is a total team effort between home and school and without teachers who care,  all three of them would be most definitely not be doing as well as they are. I can't possibly say thank you enough times or in enough ways to make teachers understand just *how much* I appreciate all they do for my kids and how much it means to me.

Every new school year,  I brace myself for the change and the learning curve. HATE the learning curve. HATE the change. I'd be a mom who was quite happy to have one fabulous teacher follow my child all the way through school. B was fortunate enough to have had a teacher loop with him this year and it was just SO nice. Brand new school year and he started it with one teacher who already knew him, already knew me, already knew what he needed help with,  and whose classroom was a safe place for him to land all year long. It has been, in a word, WONDERFUL.

I've already started working on trying to line up good fit for S for next year. I used to feel bad about speaking up about that sort of thing; but then one year, I learned a hard lesson about squeaky wheels and all that. So now I am the most annoying, squeaky wheel ever... though I'd like to think I'm a nice kind of squeaky. Probably still annoying though.  But I don't care... it matters too much.

I absolutely depend on good communication and being able to build a good relationship with my boys' teachers. If that's not possible, I feel like I'm flying blind. On one hand, I wish my kids could go through school like most others, without teachers needing to intervene quite so much (varying degrees with each boy, but they all get extra help and accommodations here and there) and without 504s, IEPs and team meetings. But on the other hand, these present kind of a great opportunity for you to really help a teacher understand your child.... beyond the 15-minute once-a-year conference.

4th grade, 1st grade, and Infants and Toddlers are on the verge of ending for us, which is so sad to me because they have ALL been so great. Come August, there will be all new everything. I worry about the unknown. But, every year, we have been greeted by new, equally enthusiastic and wonderful teachers and I decide two months in that I don't know how we ever lived without them.

So to all the teachers my boys have, have had, and will have. Thank you! This mom couldn't do it without you! (And uh....I'm sorry for all the emails....)  ;)

The One in the Middle....

Of all three of my kids, I actually worry about the middle one the most with regard to school and sometimes just life in general.  I have realized I am also, unconsciously probably, most protective about his privacy about what he struggles with.  (which is probably why it has taken until now for me to write about him here)

The other two have their struggles, yes but...  the oldest, B, is a model student, bright in all the traditional ways that teachers can easily see. He is unorganized sometimes and struggles with the social part of school now and then; but the academic world, overall,  is a very good fit for him.

J, I can already tell is going to be mostly like B, but likely with more behavior issues. (B is a rule-follower to a fault)  J isn't afraid to defy authority and doesn't always comply easily with things he doesn't find interesting. There will be issues, for sure... socially and behaviorally, but I don't worry TOO much about him not being able to learn or succeed in school. Despite all the talk about him needing help in kindergarten, I don't doubt that once we get him situated in school, he is going to take off just like B did.  (I hope those words don't come back to haunt me....)

S, on the other hand... his struggles are SO different and I still don't have a good handle on them. First and foremost, I should say, we KNOW he is intelligent. When we had him tested recently, some of his scores were well into the superior range. The problem is he seems to have trouble demonstrating this in a traditional school setting. He is very VERY slow and deliberate with everything he does. What he DOES have in common with B is his ADHD diagnosis, but that's more or less where the similarities end. The testing showed very slow processing, low working memory and fine motor problems, including dysgraphia.  (all testing jargon that basically means he is S-L-O-W) So in school, by all initial appearances, he is bottom of the pack.

Thank GOODNESS he had a teacher this year who was very open-minded about him and seemed to see potential when things looked pretty dismal. After she read his testing report, we worked together (along with the rest of the student support team) so come up with plans to tap into what we could see on paper he had in him. Those interventions have been amazingly successful. He went from reading at the lowest level at the beginning of first grade, to slightly above grade-level now. He went from barely being able to form letters, to being able to finally write without struggling to execute every stroke.  His teacher has also told me his math reasoning skills are on an entirely different plane than the other kids, so though he struggles to keep up with them much of the time, he definitely has gifts to balance this out that are only just now becoming apparent.

I feel like he is a kid that, just a decade ago even, might have gone overlooked as just a slow, possibly below average student.  On the whole, I feel like teachers are SO much more tuned into kids' different learning styles now and different types of intelligence than ever before. My children are amazingly lucky to be growing up right now as opposed to a generation ago. I have family members who can attest to this, as they were overlooked and under-estimated in school.

That being said, school in the traditional sense is NOT particularly ideal for him. If I had to craft a school just for S, everything would be hands-on with lots of experimenting and exploring.  BUT, I can't give him his own school, so I've realized I will always have to be proactive in fighting for him to be seen and recognized and as capable kid. Every year is going to be starting over with a new teacher and having to explain all that he will not demonstrate on his own without help. I promise you this is a child will grow up to do something creative or math/computer-related. He is a builder, an experimenter, and a doer and has been since he was just a toddler. He has SO much to offer. I just have to keep hoping and praying we get him teachers who can see it in him and are willing to work to help him show it.

This is kind of funny to me, but I feel like, in so many ways, my ASD kids will almost always have things easier in school and in life than S.  I also understand the other two better... how their minds work. I feel like S is a nut I can't quite crack.

I worry sometimes that we didn't quite nail EVERYTHING with the testing we had done. There are still things I see him struggle with that I don't feel like were really explained by what we learned. Swimming, for example. He can't coordinate his arms and legs moving together in the water at all... and when he tries it has a look to it that is just sort of... odd.  I feel like his struggles are always amplified to by the fact that almost EVERYTHING he is not so great at,  is something that comes really easily for his oldest brother. It doesn't seem to bother him... he's amazingly confident in himself... but I worry that someday it probably will.

I feel sad for S that he is the different one, the one who will probably struggle to keep his head above water in school all the time; but I'm sure it will somehow serve him well in life in ways I can't yet fathom.

Little Reminders...

A fight broke out in my living room bright and early this morning. S and J were playing cars happily while I packed lunches for school. The next thing I knew J was lying on the floor, facedown, crying.

"S, what happened out here?!" I asked.

"I didn't do anything. He's just mad I pretended my car was an airplane and he punched me." said S, matter-of-factly.

Indeed, this sort of thing is pretty commonplace in our house.

J wailed from across the room. "He made his car an airplane!!! Cars can't fly, cars can't fly!!!! He can't make it an airplane!!!"

I picked him up off the floor, stood him up, and held his face in my hands so he would look at me. "J, S was just pretending his car could fly. That's fun! You need to let S play with the cars the way he wants to play with them and you play with the cars the way YOU want to play with them."

"No no no! Cars can't FLY! He can't DO that!!!" he insisted.

Again, not unusual. Some days, everything is going along just fine and then someone sings the wrong words to one of J's favorite songs, or puts something in the wrong place, or makes a car an airplane... and he loses it.

There was a time when B was little where I figured all parents dealt with freakouts of this nature. I gradually started to realize that wasn't true, but just assumed I had more challenging kids than other people.

Now that these types of behaviors have been pointed out to me over and over again as part of the ASD, it seems SO blantantly obvious to me. I always wonder how we all missed it for so long with B.

In fact, just last night, B, who has grown out of so much of the behavior that, years ago, would have easily classified him the same as J,  had a baby tooth hanging by a thread. EVERY loose tooth brings drama for him, even at 10 years old. He doesn't like the way it feels, he's anxious about pulling it out, he doesn't want to touch it or even wiggle it and definitely doesn't want anyone ELSE to touch it... but at the same time, wants it OUT. So he just cries and cries and worries. "What if it falls out while I'm sleeping? What if it bleeds? I don't like the way it feels when it's loose. I don't like feeling the hole after the tooth falls out!" It went on and on.  And just like that, it's as if he is five years old all over again.

All in all, these particular incidents were small blips in otherwise relatively easy days, but still, they were reminders that there are challenges we will always, ALWAYS deal with, even when things are going fairly smoothly.

It's actually a relief to me to finally know that we don't just have "more challenging kids". that we have more challenging kids for a reason, and that reason being that they process the world around them differently.  I have to be honest, for awhile there, I thought we were just REALLY doing something wrong.

Not that knowing WHY J screams at his brother for calling a car an airplane makes that any less of a rough start to a morning.... but it at least I have a context with which to understand it now. :)

Interesting Article....

I am working on a new post on this topic... :)

http://archive.wired.com/wired/archive/9.12/aspergers_pr.html

""If we could eliminate the genes for things like autism, I think it would be disastrous," says Wilhelmsen. "The healthiest state for a gene pool is maximum diversity of things that might be good."

One of the first people to intuit the significance of this was Asperger himself - weaving his continuum like a protective blanket over the young patients in his clinic as the Nazis shipped so-called mental defectives to the camps. "It seems that for success in science and art," he wrote, "a dash of autism is essential."

For all we know, the first tools on earth might have been developed by a loner sitting at the back of the cave, chipping at thousands of rocks to find the one that made the sharpest spear, while the neurotypicals chattered away in the firelight. Perhaps certain arcane systems of logic, mathematics, music, and stories - particularly remote and fantastic ones - have been passed down from phenotype to phenotype, in parallel with the DNA that helped shape minds which would know exactly what to do with these strange and elegant creations."

This is J, alone again on the playground yesterday.

Just to be clear,  he's completely safe and supervised. Just playing alone. I don't expect the teachers to constantly be watching to make sure he's playing with someone. I know firsthand that it's impossible to get him to stay with the other kids. I can't even really get him to stay with us when we play outside at home. He's always disappearing to go back inside or be someplace by himself.

I watched a whole scene go down yesterday where he was happily playing on the boat and talking to himself. A whole group of kids came over pretending to be sharks. As soon as they all arrived, he jumped down and walked away. He went over to a picnic table on the far end of the playground and put his head down. Then he got down and played alone on this bike for awhile.

At one point, a little girl from his class came over and, though I couldn't hear what she was saying, I could tell she was trying to get him to play. He kept shrugging her off and walking away. She was relentless for awhile, but eventually gave up and walked away. (She actually went over to find their teacher to tell her J was sad, I think... because shortly after that, the teacher came over and talked to him.)

He just has NO interest in his classmates. None. He adores adults and will hang with them and talk to them when they are available. But other kids are not his thing.   This is part of what we worry about going forward. You can't be in a kindergarten class of 20 kids and not interact. When he does interact, it's often in a negative way or it's obvious he just does not understand how to get them to play or join their games.

It's an odd thing to watch happen. I wouldn't believe it unless I saw it for myself. A whole playground full of kids running around and he purposely separates from everyone. Is it because he wants to be alone? Is it because he gives up or just can't keep up with them socially? Is it because what they are doing doesn't interest him? They aren't playing a game he has learned? (he play things in a very scripted way, generally the same way every time)  Could be all of this. More answers I don't have....

I can count on one hand the number of times I have cried about something related to these kid issues we have been dealing with the last few years. For the most part, I'm pretty matter-of-fact about it all with an "Okay! Let's Google the heck out this and get to work!" attitude.

I remember each and every time I have cried throughout this journey though and it really had been quite awhile... until yesterday.

I had just walked out of a meeting (the one I mentioned in one of the earlier posts) to plan what we were going to request from the county for J in the coming school year. There was a lot of discussion about 4s programs, special education and IEPs, pragmatic speech and social skills.... it all gets so technical and cold and there are SO many pages of paperwork. I have to keep reminding myself that this child they are all discussing is still the same child I know. Nothing has changed. All the special words for everything always make it sound so much worse than it is. How on earth did B make it through without all this?!

Reality check: Like his big brother, J is an amazing, smart, funny little guy who is going to be FINE! He just needs a little help with some things now so life will be easier on down the road.

I get it though. We are tailoring it all to make the best case for getting him the most services we can. I'm learning the rules of the game.... but it's still hard to listen to it all sometimes.

My face must have given away all that was brimming under the surface, because no sooner had I signed the last paper they handed me, than J's teacher jumped up and walked me into another room, shut the door behind us and gave me a huge hug. The floodgates opened.

Then, sitting face to face on a red plastic cube chair with one of the few people who really gets it and has walked this road with us for the last two years, it all came out.

What would happen if we just walked away right now? What would he be like in kindergarten without intervention next year? Why will he struggle in kindergarten? How will teachers see him? What will they think? Will he need an aide? Will he go into a special classroom? Will he be okay with other kids? What would he do? How will he act? Will he be okay academically? How on earth did B get through without any of the help J is getting? HOW?

There are no answers to these questions right now; but just putting them out there gives me some feeling of control back.

I cried for all the answers we don't have.

I cried because it's real now. For two years, he played with teachers and therapists in our home and he was challenging and quirky, but it was kind of fun "work", honestly -- and no one ever said the words, "He has autism." It was real before in that we knew something was different, but NOT real in that we didn't truly know what that was. Part of me held out hope that he would age out of Infants and Toddlers and that would be the end of it.

I cried because I love him the way he is, I don't need to fix him, and a small part of me wants this all to go away.

I cried for B, who didn't get all the help that J is getting and suffered for it later -- all because I didn't listen my instincts that something was wrong.

I cried knowing that it's BECAUSE of B, I HAVE to keep at this with for J.

I cried for the end of this season. Because after J's 4th birthday,  everything is going to change. He'll move into a county preschool setting, most likely. Very different from the home-based services and now small-group we have gotten so comfortable with.  And frankly, I'm about as good with change as my son, which is to say, not so wonderful. So... there's that too.

And I think I just plain needed to cry for awhile.

But I'm good now..... I think. So let's get to work!

Background....

Here are some essays I wrote when this journey started....  the most recent one was written last June and we already have more answers now than we did back then. I think it's getting to be time to write again. ;)

http://www.tobhessays.blogspot.com/2012/07/852.html
http://www.tobhessays.blogspot.com/2013/06/852.html

Here's Another Story Very Similar to Ours...

http://thestir.cafemom.com/toddler/101444/my_autism_story_cheryls_daughter

I had a hard day today. Throughout this journey, I have always waffled back and forth between "My child truly is very different from other children and there is no denying it." and "Yeah, there are some issues, but he's just quirky. Whatever."

Today was more of the latter.  Former? Latter? The one I said first. ;)

We had J's IEP transition planning meeting. Really, just a quick paper-signing event, honestly. But all the clinical talk never fails to send me to a bad mental place. Special education choices, what will happen if..." what does he need? what will he qualify for?

I have ALWAYS known my kids were different. Always. Always. Always. I also read a TON, and so I was VERY aware what we saw in our boys was probably in the realm of a spectrum disorder-type issue.  Geez, I'm even the one who brought it up to the pediatrician about B two years ago. I guess I just never thought I would really hear anyone ACTUALLY say the words, "Your child has autism." "It's autism." "This is something we see with autistic children." etc.

As much as I have accepted the idea of having kids on the spectrum and become such a proponent of early intervention, sometimes I want to just run away from it all and say, "You know what? This is too much. He's quirky. He's not so great with people all the time and he likes his routines. I can actually really appreciate all of that! Can we just call it quirky and accept it for what it is?" His smallish world is really very accepting of that!  We're all good with it.

I know that won't help anything though.  Even if the rest of the world were totally accepting of his quirks as we are,  he NEEDS to work on this. We NEED the help and the support so he can reach his potential both in school and in life.

 I just have these moments where it's so undeniably REAL and daunting and there are so many unknowns -- where I feel like it's ridiculously unfair that my kids even HAVE to conform to these social expectations.

I don't like not knowing what choices are right and how things will turn out. I THINK it will be okay,  maybe? I hope. I hope we make the right decisions....

So this weekend was kind of a whirlwind one for our family. We ran from place to place, each of which had its own challenges and behavior expectations. We had also been taking the break from school as an opportunity to buckle down on some potty training consistency for J. (which is a whole separate post....but anyway)

J's "preferred item/activity" (as they call it) is his Nintendo DS. I truly wish it were anything but that, but that's what it is, so there you go. He WOULD play it all day, left to his own devices, but, because we are at least TRYING to be decent parents, obviously, we limit it.  Because he loves it so much, we use it for motivation (such as potty training) and for when he needs a break from everything.

One of our destinations this weekend was our niece's 3rd birthday party. It was just family, but even with just family, it's ten adults and seven children from newborn - 10.  To put it mildly, it's chaos. VERY... LOUD.... CHAOS.   (even *I* find it a challenging to handle sometimes.... so I KNOW J does)

He actually did really well for quite awhile. He played in the backyard alongside his cousins pretty nicely, but after about 30-40 minutes of that, he started acting out. At one point, he swatted at the birthday girl for asking him to move out of the way so she could swing.  He didn't want anything to do with the other kids at that point. He asked to go inside. I took him in and he immediately retreated to a corner with his DS.

Now, if you had stumbled upon this scene at a party, you would probably immediately think to yourself, "What kind of parent lets their child play DS at a birthday party? That's ridiculous!" Believe me, I think that all the time and it's MY child; but it relaxes him and gets him back to a place where he can handle more demands, social and otherwise.  He did okay after that. Made it through presents and cake and saying goodbye nicely to everyone.

I have spent a lot of time over the years one-on one-with my two kids who need this time away from too much stimulation.  We're always the people in a quiet room or in a corner at some point during a party. My husband and I once took turns sitting outside of the Mexican restaurant in Epcot while everyone else ate dinner because B couldn't handle anything about it... the smell, the ambient noise, the lighting... it was just too much. As someone who very much values peace and quiet in the midst of chaos, I sort of don't mind this particular aspect of my kids. On the other hand, it would be nice sometimes to be able to take for granted that when we go to a social event, he would get excited about being with the other kids and just go off and play happily like everyone else.

Anyway, this is just another example of something that is subtly different about J and lots of other kids that you might either not notice, or stumble upon and misjudge what is going on.

Somewhat related, here's another interesting video I stumbled across.

They've been telling me that J may need assistance  when he gets to elementary school...  (I'm hoping not, but no one really knows anything for sure yet. It's kind of a wait and see game)

This video shows some of what I imagine we might encounter with him in school (probably to a lesser degree.) I post it partially because I thought it was neat that they use a DS for this little girl as something  to motivate her. I also just love this series of videos and how well they explain certain aspects of ASD that people might not be aware of.... like how typical kids get are motivated by the social aspect of school and get their "breaks" from social experiences .... and how ASD kids may NOT be motivated by that. I know J is certainly not at all!  B is only just this year really interested in that in 4th grade! So that has most definitely been our experience.

Check out the other videos in that series if you are interested.  They aren't all about high-functioning ASD kids. In fact, most are not. But you'll learn a lot!

Edited to Add:  I just realized I posted the same video here AND below. LOL! Oh well, it's a good one.  ;)

Interesting Video....

This whole series is actually pretty great....

But here's an interesting one about school.  

https://www.youtube.com/watch?v=riS53sCbLfo

The comments on the video are worth noting too. This particular one hit home:

"To the people out there who think this is just "rude" behavior, I get it. My son was just diagnosed with ASD after years of struggling with similar behavior. All kids will test authority at some point. So when is it the autism and when is he just being a pill? Can the two be separated? I'm guessing many kids with ASD appear to be rude. I'm not sure I can tell the difference but after watching this video I think it should help to open up the minds of some people to the possibility that's it's a little more complicated than simple behavior problems for many of us who are struggling with autistic children."

Child's Play....

On Monday, I got to the preschool a few minutes early, as I typically do, so I could sit on the steps near the playground and watch J play. I've done this with all my boys over the years. It's one of only a few opportunities I really get to glimpse their preschool world.

This particular day, I searched the playground, trying to remember what I had dressed him in that morning. Finally, I found him,  wandering aimlessly around the little cement court, far away from everyone else. On the main part of the playground, the other children screeched and ran around happily. Some of the little girls skipped by holding hands. Everyone, it seemed, was playing with someone else.... except for J.

He seemed content enough. But it was sad. This is when I really get slapped in the face with how different he can be. At home, it's easier to pretend nothing is all that different about him. When he is among peers, there is no pretending I don't see it after all I've learned the last couple of years.

The school day before that, I showed up and found him playing in the playhouse with his teacher from Infants and Toddlers, who had come for one of her visits. There were two other little boys and at first, they seemed to be all playing together, but when you looked more carefully at the situation, J was only on the outskirts of the game, talking to himself.  Occasionally, he would join them in running around the house and going through the tunnel, and then he would tune them out again and do his own thing, while they played in the vicinity.

Again, he was happy, so why am I sad?

I'm sad because his natural inclination is to play alone (except at home with his brothers sometimes). He is always doing his own thing or hanging with me, while other kids are excited to play with each other.  It's not that other children don't WANT to play with him. It's that he doesn't know how to play with THEM.

I'm sad because on the surface, the play happening in the latter scenario actually sometimes SEEMS okay and then when you look closely, it's NOT and so few people understand WHY it's not.

I'm sad because I've watched this all play out before with B -- and I am lucky enough (or not?) to have a crystal ball in the form of my 10-year-old son and I can see where this leads without someone to hold his hands teach him the rules other children learn naturally.

You see, if we don't help NOW, eventually, years down the line, he WILL likely care about other kids and their games and he won't know how to enter in, because he didn't pick it up through experience and experimentation when his peers did. He might not able to tell who is even interested in playing with him, or when they don't want to play his game, or if they don't like him. He will not understand what a friend is and may think EVERYONE is a friend...  this will lead to some heartbreaking lessons down the road. He will EVENTUALLY figure some of it out, but will always be a little awkward socially, never quite understanding the "rules".  We have watched all that and more happen to B...

This is the sort of thing I wish more people grasped about why I worry... and why we work so hard to make sure J gets the help he needs.  We have traveled this road before, always knowing there was some kind of disconnect, something different, but not understanding what it really was or what to do to fix it.

I am thankful that with J, we DO understand.

That crystal ball I have also tells me that things will be just fine in the future. J will be okay, just like B is okay.... not without struggles, but definitely okay....

.... and he'll be okay even sooner because of the effort we are putting in NOW.

So What's the Big Deal?

This is another phrase I hear a lot from people. They will listen and agree that two of my kids have these sort of quirky things about them and can see, quite obviously usually once I point it out, the social weaknesses. The inevitable question is something like, "Yeah, so? I hate loud parties and the texture of jello makes me gag ... and I'm okay?"


On one hand, I completely agree. I'm quirky too. (which is a separate post altogether!) Who isn't in some way? All people have varying levels of social IQ.  And who DOESN'T have some kind of sensory preference or aversion?  What does it all matter in the grand scheme of things? We're all different and everyone's a little weird. Why not just let them be who they are?


You know, more than anything, I do want my children be allowed to be who they are because they are AWESOME. (and honestly, who they are can't be changed much anyway!) But I also want them to be able to cope with the social expectations of the world in which they live because, as unfair and overwhelming as these expectations sometimes seem for people with social deficits, they are things you have to learn to at least some degree in order to get by in life.  The world can be a harsh place.


Still, I do like the idea of seeing it not as a disability, but as a different way of thinking.


I found this article that I thought was really interesting that addresses that idea... here's a section I really liked that describes some of the differences you can see in my boys.  (sidenote: this is an old article. Aspergers "doesn't exist" anymore... it has all been lumped into the heading of Autism Spectrum Disorder.)

Asperger's syndrome (AS) and High-Functioning Autism (HFA)

Autism is diagnosed on the basis of abnormalities in the areas of social development, communicative development, and imagination, together with marked repetitive or obsessional behaviour or unusual, narrow interests . Individuals with autism may have an IQ at any level. By convention, if an individual with autism has an IQ in the normal range (or above), they are said to have 'high-functioning autism' (HFA). If an individual meets all of the criteria for HFA except communicative abnormality/history of language delay, they are said to have Asperger's syndrome (AS). In this paper, we focus on AS and HFA since we accept that an individual who is lower-functioning necessarily has a disability in the form of retardation. What is not clear, and therefore the subject of the debate presented next, is whether individuals with AS/HFA necessarily have a disability. For the present purposes, we consider the arguments in relation to AS and HFA, without attempting to draw any distinction between these.

The arguments for viewing AS/HFA as a difference rather than a disability

1. The child spends more time involved with objects and physical systems than with people (Swettenham et al., 1998);
2. The child communicates less than other children do;
3. The child tends to follow their own desires and beliefs rather than paying  attention to, or being easily influenced by, others’ desires and beliefs (Baron- Cohen, Leslie & Frith, 1985);
4. The child shows relatively little interest in what the social group is doing, or  being a part of it (Bowler, 1992; Lord, 1984);
5. The child has strong, persistent^[2] interests;
6. The child is very accurate at perceiving the details of information (Plaisted, O'Riordan & Baron-Cohen, 1998a; Plaisted, O'Riordan & Baron-Cohen,   1998b)
7. The child notices and recalls things other people may not (Frith, 1989);
8. The child’s view of what is relevant and important in a situation may not coincide with others (Frith, 1989);
9. (dates, . The child may be fascinated by patterned material, be it visual (shapes), numeric  timetables), alphanumeric (number plates), or lists (of cars, songs, etc.);
10. The child may be fascinated by systems, be they simple (light switches, water  taps), a little more complex (weather fronts), or abstract (mathematics);
11. The child may have a strong drive to collect categories of objects (e.g., bottletops, train maps), or categories of information (types of lizard, types of rock, types of fabric, etc.); and
12. The child has a strong preference for experiences that are controllable rather than    unpredictable.

Those are NOT negative things and some are actually gifts!

If you have never heard a three-year-old read a book out loud, or tell you how to connect your computer to the wireless network -- if you have never  watched an enraptured six-year-old with his nose pressed against the glass of a shark tank rattling off the finer details of shark anatomy to anyone within earshot, or heard him tell you with as much passion as any scientist why space and black holes are so interesting, then you have not seen the fascinating  beauty these differently wired brains can hold.

Social disability? Maybe. Challenging at times? YOU BET. The rest? Wonderful differences that keep our lives (and our world) interesting.