A Long Overdue Update.....

I'm still around! As, it turns out, life with three quirky boys all in "real deal" school is quite busy.  I sometimes feel like my brain is shared with three extra people.... which I guess is a typical mom feeling, but it's definitely amplified when there are executive function issues.

I'm going to take my update one child at a time, one post at a time.

So..... B.

He is 12 now, almost 13 and in the 7th grade. He has been at his private school since the middle of 5th grade, when we pulled him out of public school thinking smaller class size was the answer.

In some ways, it was. It didn't NOT help. It also didn't fix everything.

This year, he began going to resource period in lieu of foreign language. While this is a wonderful thing, we were all a little disappointed because as it turns out, learning a foreign language is something he's really great at.  Nevertheless, this was the option afforded us, so we took it.

In resource, they help him prioritize his homework and projects and give him time to work on them. They are supposed to also be teaching him HOW to organize himself, though that isn't happening the way we imagined it. I will say, since starting resource period (and starting back on ADHD meds again), his grades have improved and less homework is going "missing".

We just had updated psych-ed testing done for B.  We are such frequent fliers with our three that the psychologist offered us a discount this time.

He was last tested when he was 8 years old and entering third grade.  Guess what? Still ADHD. LOL. No surprises really. We did however, learn that he is more or less a math genius, which DID come as a surprise, particularly since he struggles so mightily with algebra this year.

His executive function issues are as bad as ever, and the effect is evident in some of his scores involving working memory and writing.  I wish people who think ADHD is a myth would look at an educational report of a child who has it. It's hard to argue when you see it by the numbers..... and heartbreaking when you can see on paper how much your child struggles to keep up when there is organization and focus involved.

The biggest surprise that came out of the new testing was that B, like S, is also dysgraphic. Any handwriting component in the testing brought down his speed and scores down substantially enough to qualify him.  The difference between B and S with this is that B doesn't have any other disability with written language.... strictly the motor component.  So he can compose a paragraph/essay/whatever just fine, but handwriting it is challenging and tiring. Basically at this point, it just means he needs to type more often than not, which, by middle school is happening anyway.

The psychologist is very much pushing for us to move him to a better fit for school next year and we are strongly considering it. There are a couple teachers at his current school who are just SO rigid and so unwilling to budge in how they deal with B and it's incredibly frustrating. We have a kid who is super smart, wants to please, and WANTS to do well..... and they just won't help. There are also a few that do an EXCEPTIONAL job with him and see only the good, amazing things he can do.... and that is what gives us pause about making a move.

Anyway, so there we are.... I'm not sure where I thought we'd be with him by now. I guess I thought he would have improved with his executive function issues more than he has just with maturity. Now I know he needs literal step-by-step instruction and structure across the board at school. Inconsistent teachers are his downfall, as are open-ended projects. And inconsistent teachers who give open-ended projects? Just forget it.

I'll update more soon as we make a school decision. We have found a school that structured very well for kids with executive function issues. I'm hopeful it's the final move we'll need to make and this will put on him on the path to amazing things!

Still Here, Still Quirky...

A friend asked me about this blog recently and I realized I've completely let it gather dust.

Well, so we are still here.  This year, we are braving 6th and 3rd grades and kindergarten.

First up, the kindergartener....

I hesitate to say this, lest it be taken the wrong way, but I have been ready for this particular school year since J was about six months old. I enjoyed being home with him, and I truly savored the last of the preschool years, but we were ALL ready for that child to start kindergarten.

It has gone both better and worse than expected. Is that possible?

The better - he goes every day and is generally happy to be there. He loves his teacher and he loves all the busy-ness of the day. HATES when he has to miss center time for some reason. Is engaged in class, raises his hand and has made some cute friends. He LOVES the learning. He is also more well-behaved than I expected.

The worse - He hates writing. I thought this would improve with some peer pressure and the higher demands of kindergarten, and to some extent it has, but the progress is slow and it has been a rough road. This is one of the reasons I am incredibly thankful he started the school year with the IEP in place. He gets OT once a week and his teacher knew all about him before school even started. There have been some tears and some defiance, and two days ago, he caused quite a ruckus when he had an epic meltdown over being pushed to write something.

Today he had a freakout because a sticker he got for something ripped. He also hasn't been eating his lunch because he smells peanut butter everywhere. (sigh)

Socially though, which was a big concern, he is doing great! He talks to his friends, he wants to invite them over. Still interacts much better with adults, but he plays with other kids on the playground now, which is HUGE!

I worry a lot about people getting him. His teacher is great, but I worry one of his meltdowns is going to land him in the principal's office. He genuinely needs help calming down when a meltdown happens and I need to figure out how to make sure they understand how to do that. There are a few people who get him and are always helpful and know just what to do. I worry though that one day he's going to end up with someone who doesn't.... then what?

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.