We Are an Island

I remember back before our diagnosis, I had a list of things in my head that we were supposed to do:

1. Join a mom's club
2. Go to play dates 
3. Host playdates
4. Attend library groups
5. Play at the park
6. Enjoy Mommy nights out with friends.

I don't know where I got this list, it wasn't stuff that I did when I was super young but that was the list we were working off of and...

We were a horrible failure. 

Seriously, we got kicked out of the Mom's club because my son was "too rough" he was "too loud".

Play dates always ended in me hovering and him (again) being too rough or screaming.

When we hosted, I just didn't understand all these other kids who were taking every single thing out, putting it in their mouths and then throwing it into the center of the floor while their mom's talked about potty training and nursing schedules.

We screamed through the entire library's Read and Play session, we signed up once and only attended 3 times.

Parks were a place where I begged him to play and he ran away, always towards danger, never looking where he was going, usually ending with him running in front of a high swinging kid and getting knocked into next week.

Mom's nights out were a partial success. After being kicked out of a local Mom's club, I joined one that was more online and less judge-y and there were a few good Moms nights out I'd call a success. Of course they were rare because I couldn't attend often.

Now fast forward... we got a diagnosis (ahhhh! that makes sense!), OT, Speech, Baby Brother born, practice PreK, Special Ed PreK, Baby Brother Diagnosed as well,  PreK, K-5, NonPublic Placement... and NOW.

Those play date days are far far behind us and we never really got the trick of it. Since then the invitations to play and hang out are very few and far in between and most of the time we have to decline for scheduling reasons.  So now, here we are, 13 & 11 and I have no idea what I'm doing!

We were invited to come and play today, we know them from school, we like them but we've never been to their house and they have never been to ours (this is a universal truth for almost everyone we know). The boys didn't know what to expect and do and quite honestly, I didn't know what to expect and do.  We've been an island for so long, we don't exactly know how to change.  It's not really in my nature but I don't want my nature to limit my boys and I'm stuck.

There are many reasons why I'm worried about this, many of my own issues in my own mind, certainly enough for their own blog post so I'll save it for another day. I can't even say that the play date went badly, it was very nice because our host is one of the nicest (and smartest) people I've ever met. It was just awkward. I know I felt awkward, the boys surely picked up on that and maybe felt it a little themselves.

Now I'm left wondering how I can create a village for my boys? They will one day need a village, they probably need a village now.

How do we do it?

They say that if you've met one person with Autism, you've met ONE person with Autism. Autism is such a broad diagnosis and each person is extremely individualized. I have two boys with Autism who couldn't be any more different. They, themselves, don't really even work well together in the same village.

At one point I figured that since my youngest was high functioning and very social, he would probably do well to make friends with typical peers. Except that he doesn't fit in and now that he is older, most boys his age just look at him like "what are you talking about?". It's not working, he doesn't have any friends and now he is heading in to middle school and it's not exactly going to be an easy road for him.

Around the same time, my oldest was really struggling and needed a school with more consistency and routine. He went to a non-public school and I stressed about it. It's been great for his anxiety, aggression and behavior and he is probably even accessing his education better (although at a slower pace). The price for that he regresses, isn't moving forward with his interests, goes into his "bubble" more and has completely fallen away from things that would be considered "normal" or "natural" for a 13 year old.  His current classmates probably mirror him best in temperament, educational and communication level and at the same time, they don't.

So I continue to try and step outside my own comfort zone and keep trying. More times than not, everything goes perfectly fine and I still feel like it didn't work.  I don't know, I guess I just thought that since I had the to do list it would all be easy. I thought that by the time we got to ages 13 and 11, we would have a core group of friends that we would hang with. The mom's would sit pool side and chat and relax while the kids ran around and played. That there would come a time when I could let down my guard and relax a little. The reality is that the only time I can let down my guard and relax is when we are on our own little island, sequestered within the walls of our home.

It's not what I want for them, it's not what I want for us. We just don't "fit" anywhere and I fear that our village is out there, in pieces, they are their own island.

Links I found on Pinterest...

Seven Social Skills Worksheets for ASD Kids Who are Socially Isolated

Social skills card teaching activity for children with ASD who are isolated

5 Things Special Needs Moms Won’t Tell You

Are We Calm Yet? Making CALM JARS

It's day 3 of Summer Vacation and as I stated earlier (on the Facebook page) it is the summer of ART! Today we did our first project. CALM JARS

I would love to say that the boys are super excited about the Summer of Art but quite frankly, they aren't so stoked.  Art doesn't usually involve a screen and they are very very addicted to screens. Part of the plan was to choose projects to get them away from screens so like it or not, we will do ART! (or crafts, whatever)

Today we were supposed to have storms all afternoon so I figured it would be a great day to do Calm Jars. I found this link:

http://www.therealisticmama.com/11-awesome-calm-down-jars/

And decided to have the boys make the Glitter Calm Down Bottle while I made the Ocean in a Bottle. Both are super simple and don't require a lot of materials.  I had a few left over bottles, two NeuroBliss bottles and one small Smart Water bottle.  

First we assembled our stuff, 

Cameron chose purple, gold and green glitter with gold stars. (The M&Ms were snack and my leverage to get them to come to the table) Adam chose blue and silver glitter and silver stars. I spent a good amount of time trying to decide which order these should go in the bottle, the instructions were a little vague so I tried to be logical.  We went with:

Glue -> Food Coloring (1 drop) -> Glitter -> Hot Water

       

The glue took the longest, received the most complaining and almost doubled as heavy work. There are much easier ways to get glue in a bottle but I'm glad we squeezed it through the little orange cap, sometimes things aren't easy but they are worth it.  

My jar was probably the easiest. 

Fill the bottle 2/3 full of water -> I added white glitter (why should the boys have all the fun?) -> fill the rest of the bottle with oil -> Shake

The result!!!

Cam's is on the left, mine in the middle, Adam's on the right

Are we more calm? Nah. Did the storm arrive? Nope. How long were we off of screens? ONE SOLID HOUR! I'll take it! 

**That sounds like they spend the entire rest of the day on screen which isn't exactly the case. When they aren't on screens they like to look through the books we got at the library, maybe even read some of them, play with Legos, fight and ASK CONSTANTLY for screens!!! Sometimes they eat too.**

Welcome to Free Day

Today wasn't supposed to be a Free Day. I had plans for the day, an adventure!!! Well, not really, the boys love doing the Utz Factory Tour during the summer and I had planned on taking them today. Unfortunately, the (free, self guided!) tour isn't open on Friday.  :(

The Hubs and I talked about it this morning, me saying, "I don't know what to do today, I *should* stay home and do laundry but the boys will be so bored!" He suggested a "Free Day", kissed me on the forehead and headed back downstairs to make sure the boys aren't eating cookies for breakfast before heading off to work. (I'm a lucky gal!)

I laid back in bed and thought about a Free Day, what would that look like? What would we do? There would have to be rules, we can't just go with Martial Law for a full day... can we? 

No. 

Since the forecast looks like this 

(Love you Just In Weather!)

And the laundry pile looks like this

(http://botaday.com/node/1267)

A FREE DAY it will be!!!

Rules for a FREE DAY:

1. You may do whatever you want EXCEPT: property destruction, saying mean or hurtful things, hitting, kicking, biting, spitting, bumping, slapping, sitting on another person, or anything else that may fall under the category of "keeping personal space" (some exclusion apply*)
2. Any infraction of the above rules will result in a 30 minute Free Day ALL STOP! It doesn't matter who did what, where it happened or if you feel "justified" in your behavior. An ALL STOP means everything goes off, silence will reign and I don't want to hear another word for a minimum of 30 minutes. 
3. All regular screen restrictions apply, this does not mean you have full access to Netflix, YouTube, or the entire Internet in any way. 
4. I want to hear all about your Wii adventure, movie, tv show, book, picture, Lego creation, etc!!
5. All daily chores and personal care still must be completed. Cameron will unload the diswasher and Adam will feed the cat after dinner, as usual. Additionally, you will be responsible for folding your laundry basket after dinner as well. Teeth brushing, showering, putting on clean underwear, wearing deodorant is NOT OPTIONAL!

You will find me in the laundry room... Just kidding! 

I spend the majority of the year saying no, limiting screen time, policing the "junk food" stash and making sure everyone's shirts match their pants, the idea of having a day where I get to say YES the majority of the time makes me feel giddy!  Being able to give myself a free day as well is very appealing. I'll still cycle the laundry because it needs done but maybe I'll also listen to a great audio book while I'm at it. I still need to make sure the troops get fed, but maybe it's okay to heat up the left over pizza and call it lunch. Maybe I'll tackle one of those big clean up, non-priority, projects (my desk!)  or maybe I'll start a new crochet block. Maybe I'll sit downstairs and watch Adam play Splatoon, maybe I'll even get to play too!  Maybe Cam will ask me to play a board game with him or watch a game show! Honestly, I cannot wait to see how the day will go.

For now, you'll have to excuse me. It's 8am and I think I'm going to have cookies and milk for breakfast. It is a Free Day after all.  

* exclusions include hugging, kissing, cuddling and snuggling Mommy. 

What? Teachers are People Too?

Today is the last day of Elementary School for my youngest son, Adam.  Both my boys attended this school from K-5th so I've been working with the administration, teachers and staff now for 8 years. It's very hard to say good bye. We have struggled and triumphed within the walls of that school and its hard to imagine anything different.

Today I sent in Thank You letters to the teachers, a lot of them.  There have been so many people who have helped my boys gain their educational foundation, everything else from here on out will lie on top of that sturdy foundation.  They helped me too, without their patience and expertise I would not be as strong an advocate as I am today. I'll tell you, it's hard to express all of that in a card, gift or even a blog post.

Along with this note, I also added the URL for this blog and the Facebook page too. That was sort of a difficult thing for me. If you are a long time reader, you know that I have been angry, hurt, scared and humbled over the years. I've written posts about all of it, some of the darkest days when Cameron was out of control was written about on this page. I worried what the teachers would read, how they would react, would they be mad? 

Then I remembered my goal for this page, I want to be honest about Autism. I want to show the good and the bad. I want to remind everyone that Tomorrow is a New Day, that a bad day is not a bad life, that we are all human deserving respect and care, that overcoming what is in our heads sometimes is the first step is making a difference...

I remember a day when I was about 8, I was at the public pool in Lebanon, Missouri. This is where I spent the majority of my summer, Nintendo wasn't invented yet and AC was a window unit. The pool was the place to be on a hot day. One of my teachers was at the pool with her kids and I just sort of blanked out for a minute. My teacher was a mom?? What? 

In my mind teachers, like doctors, were elevated above simple things like raising a family and keeping house.  They were all knowing and never questioned.  Needless to say, this thought changed that day and has continued to change though out subsequent years. Still, I hold teachers in the highest regard and count many of them as friends.  I cannot imagine being a teacher right now, the expectations of them are so high, the pressure and stress is intense and the demands put upon them are unfair. I will always be on their side for wage increases and additional support and resources in the classroom. More than once in the last few years I have been so frustrated and wanted to yell, "Just let the teachers teach!!!" when the testing days dragged on and on and curriculum spiraled out of control.  

I've been mad, sad and desperate over the years and it has all shown up in some form on one Lunatic Autism Mom page or another. I have always respected the privacy of my son's teachers and never posted anything on these pages about them specifically but I have been mad and scared at specific times and I've used this page as a way to get those feelings out. I hope that this does not turn away the teachers I've invited to this page today. Every event has taught me something, every argument, every scary moment has been another step in our journey. Most days I wish life didn't have to be this hard, that every single thing wouldn't be such a struggle, then I think of where we are now and where we once were... we have come so very very far and we have many teachers to thank for that.  

What? Teachers are People Too?? (pending post)

It's only half written! But it will be done soon so check back, in the meantime... this is soooo Adam!

Decisions... Get The One You Want

Sorry for the long break in between actual blog posts, if you follow along on the Facebook blog page then you already know that I'm up to my neck in Middle School placement stuff. Unfortunately there is no end in sight.

In dealing with all the placement issues I have kept a statement in my head, it is universal and all encompassing and I want to share it with you all.

Decisions are made from data.

Simple, to the point, easy to remember.  I liken it to my every day rule of Behavior is Communication. Not a day goes by during a transition year that I don't remind myself that Decisions are made from data, data has no feelings, data doesn't lie. 

This statement has prompted a change in my placement efforts, it started with my oldests son's placement into a Non-Public School (Kennedy Krieger School) and has been fine tuned into my youngest son's placement this year (to be determined... STILL!). Its a shift in thinking and its not easy but it is EFFECTIVE. Here's some advice:

Start charting every piece of data you have in a spreadsheet. Start in Kindergarten and keep going. You will quickly see what data you are missing and can then ask for it. When you are looking at how your child is progressing in grades, support visits, behavior, whatever, you have it all in on one sheet to quick reference. I have had many spreadsheets over the years but the ones I am working off of currently are Grades, Global Scholar Scores, Goals, and Quarterly Classroom Assessments.  In the past I've also had spreadsheets for Support Room visits per day and Targeted Behaviors. Anything the school keeps data on you have access (request it!) to and you can chart it.  

For this transition year I have created some charts from the spreadsheets so that I can easily show how my child is progressing (upward or downward trend). By adding in the upper and lower bounds of the testing population I could then get a picture of what my child would look like when placed into the general population. A graphic representation is hard to dismiss or ignore when you use the school's own data to show a downward trend of a student falling far below typical peers.  

Here is what I plainly saw and could then plainly present to the IEP team once I gathered all the data. Grades were decreasing. Goals were not being met (and I thought I was on top of that but years were passing and goals were being changed without actually achieving the initial goal! I was shocked at the oversight!). His Global Scholar scores and classroom assessments were flatlining or decreasing. 

THIS changed my entire approach to this transition year and how I approached goals, accommodations and how I worked with the team entirely... Data doesn't lie.

All of that being said, one datapoint is one datapoint. I put no stock in grades at all and even standardized testing isn't all that great either BUT my youngest child is INCLUDED so he is being compared to the "typical" student therefore as long as he is in inclusion, that data is valid. It should be tracked and considered. 

Change the language you use. How you feel and what you wish and what you think are valid and is certainly something you need to keep in mind but when you are trying to work for more speech, an intervention, a placement you will get much further with: The data shows... His current trend... What was observed within the classroom... Your feelings, wishes and thoughts can be contradicted, Data is fact.

Keep going. Most of what has happened this year, most of what I have requested, has been because it never occurred to me that I couldn't.  It never occurred to me that I couldn't contact my son's projected Middle School to request a meeting in October for placement in the next school year.  I met some really lovely and hard working people that flat out told me they didn't think they could meet my child's needs.  Okay then, thanks for your honesty. Lets go to Central Office and ask the people there which schools they think CAN meet his needs and lets visit them too.  It wasn't until very recently (March) that someone told me that this isn't how it was done. At this point I've worked all the way up the school "food chain" and never once has it occurred to me to stop.  I contact the people I think can help and I ask them for help.  I am a life long learner and I'll take any help and advice I can get. 

Work smart. I do not consider myself a Warrior Mom. I do not go into meetings mad or making demands.  It's just the way I work. Other ways work for other people.  I have my data, I have my suggestions and if anyone feels a different way than I do then I will welcome their data and their suggestions.  Since we all have the same data... see where I'm going here? I firmly believe that a team effort is the most effective way to support a student. I am a member of that team, my son is a member of that team, our specialists sometimes will weigh in as a member of the team and the rest of the team is provided by the school. Its never perfect but when it works, it works amazingly.  

I've already written way way more than I expected and now I have to get back to real life.  I will try and figure out a way to put up some spreadsheet ideas or templates that I find helpful.  They are nothing fancy but it's what I can handle.  Also, if you have a spreadsheet that has been working for you and you want to share it, feel free to do so!!!  

Hang in there everyone, we're all in this together.  

Yelling at the Pieces

This week I was given a compliment from a fellow parent, he said that he admired my patience with my boys. I should have said, “thank you” but instead I think I mumbled something about my patience being long fought and hard won. This is true. In the past fellow parents have not been as kind as I was dealing with tantrums and rages and just trying to get though the moment. It has taken me YEARS to have the level of patience I do now but, in no way, shape or form do I have an extended patience level. In all of thirteen years I have amassed a level which can last just 45-60 minutes, max. So yes, that compliment was very nice and has made me feel very good this week. I am just thankful that my younger son's appointment was only 50 minutes long while I waited in the lobby with my older son. That I did not reach my breaking point thus forcing this fellow parent to retract his praise and consider me to be the lunatic that I am the majority of the time.

Fast-forward to today and I am at odds with my own frustration and anger and I want to YELL at the thing that has brought me to this point. I cannot. They say that Autism is like a puzzle and “we'll keep trying until the pieces fit!” but there are other pieces at play in this puzzle that make up the small bodies in front of me. One of our biggest obstacles this year is helping my 10 year old traverse life with his puzzle pieces of Autism, severe ADHD and Anxiety Disorder. Its a balancing act of figuring out which puzzle piece is being played at that moment, taking into consideration the needs of that piece all the while trying to balance out the other pieces at the same time.

I am frustrated with Adam because we attended a Lego event at a busy store. Unbeknownst to me he brought along a small Lego creation of his own along with two transformers all shoved into his pockets. As we were checking out sofas after the event, he started pulling out these small toys with many pieces and parts. With the new lego creation from the event, he now had 4 things in all AND a pair of noise canceling headphones. As soon as I noticed the toys coming out of the pockets I gathered everyone and we headed out of the door, I wasn't very kind about it. My frustration was evident.

Bringing things along is not new and its not uncommon for kids with Anxiety. They need something familiar, something comforting. My own anxiety of leaving things behind and having my son freak out over a lost toy does not play well with Adam's packrat anxiety reduction technique. Once everyone was back in the car we headed out to lunch, my son was happy with his new Lego creation and my frustration level went back to a manageable level until...

We arrive home and I'm unloading the car, its raining and I want to make sure 2 Lego creations and 2 transformers are stuffed back into pockets as well as the library book my oldest brought along with him, my handbag and cell phone and...”where are your headphones?” The last time I noticed them, they were sitting on a table in the furniture section of the department store while I was shoving toys back into the pocket of my youngest's cargo pants. My frustration level went right back to where it was before and then climbed a few levels beyond that. I'm saying things like, “WHY did you bring those toys...” and “YOU KNOW you aren't supposed to...” and “I'M SO FRUSTRATED with you...” And my son got upset, actually both of my sons got upset. My youngest because I was frustrated with him and my oldest because he didn't understand why I was upset and he was afraid he did something wrong.

And I got mad at myself because I wanted to yell so freaking bad!!!! I wanted to get mad and try and get him to understand everything he did wrong and to learn this lesson so that **I** wouldn't get frustrated again. Ummmm... see that there? I, Myself, I, I, I... Wow. Yeah, that was realization #1.

Realization #2 came a few minutes later after I had shut my mouth. Getting angry at a piece of the puzzle is not new to me. I have plenty of “I hate Autism” days, I let myself have that anger and then remember that no matter what I am feeling, the boys difficulties far far outweigh my own. Today was the first time I really really needed to be angry at ADHD, the piece that was forgetful, the piece that left behind the headphones, the piece that can't think beyond the moment and see how much they will be needed 15 minutes, 30 minutes or even a day from now. So I thought, yes, lets be angry at ADHD! So I started in with the “You know...” and “I'm so frustrated...” but I forgot about the anxiety piece.

He got mad, he got sad, he got frustrated as all these pieces took center stage in defense of his choices. As I watched this unfold I realized that I cannot ever get mad at just one piece. They aren't removable or interchangeable, they are always present and together they make up a really awesome (sometimes frustrating)10 year old. I love that whole little person, every piece and part, with my whole heart. Its unrealistic to think that I won't ever get mad or frustrated again but I will now and forever remember that getting mad at just the ADHD makes about as much sense as being mad at the headphones that were left behind.

We all hit the reset button now. The Hubs went back out in the cold rain for the headphones, we all had some quiet time and peace is once again reigning in the household. Lets hope it remains for the rest of the day, the likelihood of which is about as much as the headphones walking home on their own.