Monday, March 30, 2015

lost and found

It's so easy to get lost in life and forget what we came here to do and see and feel and experience. It's so so easy for me to forget what matters to me very most in the first place. That's where I was last week- lost. Focusing on crap that doesn't matter at all in the silver lining part of my soul. It happens all the time- I feel the stress of life down on me. And the things that stab sharpest just aren't important to me big picture. Like my (ahem- this is embarrassing) hair. Or a dirty house. Or money issues. I mean really- what can I accomplish TODAY? How can I create my own happiness- TODAY. And how can I share some of it with others who -like me- are searching for what matters most.

There's one thing I am certain. When we ache, we are growing and evolving and discarding old principles that no longer apply to our life and who we want to be. Not everybody. Some people think they should always stay the exact same way they already are. I'm open to these (sometimes awful) lessons that life is intent on teaching me. I can't really say I've learned much of anything when times were good and easy.

From 1st grade until my Junior year in High School I attended schools that began with the name Saint. Private Catholic schools are aplenty in my home town of St. Louis Missouri. There are so many good things about this environment. There was extra focus on school and God, academics and sports.

My senior year I transferred to a public High school. I go back and high five that little 17 year old girl who thought she was certain she was a grown up who had to walk through those doors. And it was scary, and overwhelming, and different. I spent the first few lunches in an upstairs single bathroom hiding behind the clanging metal doors of the stall. It was such a foreign world. No uniforms. Boys. Black people. People with Special Needs. Not a Nun in sight. It was hard and awful and wonderful and incredible. If I'm going to be here alive experiencing the world, I want to experience all the parts of it. I want to open all the boxes.

Over the years I've heard many debate the merits of private schooling. They speak of better scholastic and sports. I will agree, for the most part there are more checks and balances, as well as funding so it is easier to get a better education at private school. But I realized you could get that same education and start in life at public school- if you sought it out and applied yourself. 

It's funny - when it comes to school all I ever really hear parents talk about is academics and sports. And that's what I would have focused on too for my children if they didn't have autism. Because grades and sports are those measurable life things. Instant and universal ways to define productivity and success. And of course we are desperate to raise our children in an environment that will help them be successful adults. To keep them focused and safe and to give them a good start. We look for a box big enough to contain them and keep them safe and focused. Those boxes are used to separate- the smart from the not. The athletic from the not. The social from the not. And everything on the outside of that box is less than or not important.

I think about the lessons my senior year taught me. They were not about academics. Although I got decent grades I couldn't tell you one single academic thing I learned. My lessons were about life. About problem solving. About different. About diversity. About how to say no. About acceptance. About independence. About how to function and make good choices on my own- on the outside of that box. I made some stupid choices too, and I can tell you what I learned from them.

I think we primarily go to school to learn academics. But we leave woven throughout our education are lessons about the world and life and who we are in the context of a much bigger picture. The more we can make school look like real life the better our children will be prepared. I think about the Mom I am now. A Mom I never ever expected to be. I thought I would focus on sports and smart and kind. Now I would want to know different things about the school I was sending my children to. You know- in addition to grades. Things like- How do you teach children diversity? How do you celebrate it? What do you do to help the community? My focus is different because what is important to me has changed. 

As you and I know- real life is a place where mostly nothing goes as planned. A place where we are as diverse as the seasons. A place where we are faced with hard questions and decisions. A place where there are a million different races and religions and ideas and opinions. When we spread our wings out it is impossible to fit inside a tiny little box.

Today was our first day of Spring Break. Let me tell you it looks incredibly different from Spring Break 1994 in Padre Island. We went to the Zoo with friends. Next time I would like to go to the Zoo without my children so I can actually look at the animals and talk with my friends. (I'm just kidding. Kind of.) Grey was so excited to go see the ah-mals and mostly the jaff. He doesn't tell me much- so when he does I really pay attention.

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Who am I kidding- watching THEM watch the animals was my favorite. 

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Parker was so mushed up against the glass he was flat.

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And Grey flapped and danced the entire time we were in the Sea Lion cove.

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And then we went home, exhausted (me- not them) and they played on this bad boy for the rest of the day.  Michael spent the entire weekend putting it together. We have one awesome and talented Daddy. (And thank you for the help Daniel!!!)

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I love how Doodle swings. Like he's flying.

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And I can't explain the calm that takes over Grey while he swings. He needs it like I need coffee.

Luckily it's also so easy to get found in life too. I think we are always stumbling in and out of ourselves. Sometimes it's others that find us struggling and pull us through that door of sanity. Sometimes we find ourselves all on our own. We remember what matters. What doesn't. Who matters. Who doesn't. We remember we came here to constantly change.

Wednesday, March 25, 2015

beautiful horrible life

I'm not okay.

I'm working on saying that and owning it. I don't know what happened to me growing up that made me think I always had to have it all together. I don't know what me think that not being okay is synonymous with weak. But it's there- woven throughout every part of me so deeply that sometimes I don't even know I'm not okay at first. I notice my jaw clenched so tight that I have a headache. I chew gum like it's my job to murder the little rubbery blob. That big vein on my forehead throbs in anger. 

Life is hard. It just is. Sometimes it's hard but we are able to do it pretty easily. Sometimes it's hard and it feels impossible. Every time it's hard and feels impossible it shocks me. I instantly look to see what I am doing wrong. Am I not being strong enough? Open enough? Flexible enough? Grateful enough? I just pile crap on top of more crap. I hate people who play the victim and blame life for every little thing that goes wrong- so I do the opposite. I blame ME. For it ALL. And it's exhausting to be the cause of EVERY SINGLE THING BAD in the world. (And PS- I had NOTHING to do with Obama care.)
And then I search for a way to medicate despite the fact I know those fixes are short term. When life is really drowning me- nothing really works. I don't have a glass of wine to unwind because if I'm sad booze makes me more sad. SHORT TERM GOOD- NEXT DAY BAD.  I don't take drugs like xanex. I can't ask for a prescription because I would like it much much too much. Then I would need it and mask whatever it is that is going on that I really need to dip into. I can't run anymore- my knees think I am 90 years old. Sometimes a Target trip or a new tank top from Gap is medicine enough. But lately, nothing can touch this ache.

Nothing but honesty. A readiness to say- MAN, this life ride is SUPER HARD sometimes. And I just want to GET OFF but it won't stop and it's making me dizzy. So here I am world. Having a hard time. And in the midst of the crap I am remembering the following lessons. 

Life is hard. And easy and hard and easy and hard. That's something we can depend on. We must stay fluid and be ready for the swing of the pendulum. The good always comes back around.

You are not to blame for EVERYTHING. Neither is your ex-husband or neighbor or mother in law. No one can or should have that power. Why are we so desperate to find a cause anyway? It's not a disease- it's life. Just throw out the blame.

Sometimes it's important to tell the voice in your head to STFU. Michael has been traveling for almost two weeks straight. And each day it feels like another boulder is being placed on my shoulders. This past weekend I lost it. A month ago I got my hair highlighted and it was awful. I was a mix between a zebra and a cheetah. So after feeling incredibly ugly and awful I decided I needed to take care of me and fix it on Friday. I went to someone new. And instead of getting fixed it is worse. It's not me. I left feeling scared and sick and ugly and angry and overwhelmed and completely misunderstood. I couldn't stop crying. Like heaving tears- like my hair was a loved one that died. (Now I am a skunk. Clearly my hair is intent on being an animal). Everything has felt ten times harder since then. Even tonight I was unloading the dish washer and I stopped to pay attention to my horrible inner monologue. I hate unloading the dishwasher. Why doesn't it dry the top rack like it's supposed to?! I hate drying dishes. The sucky thing is I'm going to have to do all of this over again tomorrow.  I kindly told myself to shut up and keep things in perspective. Keeping Parker on the potty for about three hours today- hard. Drying a few wet cups and bowls- not so hard. 

Those repeated lessons in our lives means we probably haven't learned what we are supposed to learn yet. This one is HUGE for me. And what I still need to learn is how to have patience during the in between. I also need to learn how to be fine not being fine. And this is me practicing it right now.

One thing I like to do is take pictures. I realize that when I am taking pictures I am also simultaneously feeling some sort of good feeling about life. And when life is too overwhelming I notice I don't grab my camera nearly as much. Today I put the horse before the chicken or whatever the heck it's called and I took pictures all day long of every day life. It helped me see how much beauty this (sometimes) hard life contains.  

Every day life...

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Greyson- it's time to get out of bed.

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It's so hard when he yells- NOOOOO. BED! I want to say- Great idea son! Let's skip school today.

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My wingman

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He HATES teeth and hair brushing

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His feeties resting on mine because they don't reach the stool. I look at this picture and suddenly I love life.

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Jack enjoys sunshine better than any human I know

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Dogs and kids are the greatest at living in the moment

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Greyson and I

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When you are five even the grocery store can be a blast

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I gave him a verbal list. Go get bananas. Go get two bags of chips. He loves responsibility. And running into my (now) bruised heals with this bad boy.

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After nap time goodness.

What do you do when you get in a funk? How do you take care of you?

Friday, March 20, 2015

this is motherhood

A discarded spoon...

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A sly smile and peanut butter mustache.

This is Motherhood.

Profound and ordinary. Whole and complete.

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I am coffee, and bubbles and comfortable shoes and memories of first kicks and chubby little baby feet. I am resourceful and creative. I am cluttered and chaos and Trash trucks ready for take off. Boredom. Enraptured. Tired. Bliss.

I love them so much there's a constant and lingering ache in my chest. An ache that keeps me warm and gives me purpose and helps the world make sense even when it possibly couldn't.

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I am muddy toes and a ring around the bath tub. I am dirty laundry and a full sink.

This is Motherhood.

Feeling exhausted, guilty, frustrated, empty, incapable and alone. Feeling giddy with love, grateful, proud, connected and strong.

I am Monday morning and a Friday afternoon. I am love and light. They are God and magic. I am teacher and student. They are happy. And so am I.

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I am angry and impatient. I yell too much and am just not cut out to do this. To be this.
I am calm and peaceful, sweet and loving and filled with gratitude so enormous it is not possible to explain. They really are mine God? Thank you.

I am awesome. I am a train wreck. I am tears. I am laughter. I am take out. I am organic. I am lost. I have never been more myself. I am a million different things in the span of an hour.

This is Motherhood.

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Wednesday, March 18, 2015

potty training boot camp

I think the most important thing to remember about this experience is that it can be incredibly fun for the entire family...oh wait... I'm sorry- I thought I was writing a different post about planning a fun weekend get away. But alas, I'm actually here today to discuss potty training a child with Super Powers (aka- Special Needs.)

So scratch all of that above. Potty training is actually not fun at all. Nope, not a single tiny ounce of it. In fact it's one of my most grueling and excruciating parenting experiences to date. But here's the great news- we did this successfully two years ago with my oldest son Greyson, and I COMPLETELY forgot how much I hated it until this very week, now that we started to potty train my youngest son, Parker. So on the bright side- yes, it is awful and hard but then you will most likely forget all of that awful part and instead be left with a happy, more independent, self sufficient potty trained child, and your time will be freed up to do more exciting things- like plan that family get away.

I am not a big- You need to do it this exact way- kind of a gal. Instead I'll tell you- Here's what worked for us and I hope it works for you too. I will give you the steps we used with Greyson. It took Grey about 3 weeks to finally just start to get the process and soon after that for his daily successes to grow bigger in number than his accidents. After about 5-6 months we were able to catch him mid-poop in order to put him on the toilet to finish. Pooping independently on the toilet took about 10 months. Sleeping and napping in underwear took the same. I waited until I saw two weeks of dry pull ups before I attempted underwear.

We just started potty training Parker on Monday using these same technique recommended by our Autism Home Behavior Therapy program, mixed with the things that work for us. These tips can work on typical children, as well as any variety of different developmental delays besides autism. I'm going to break it down into four steps because I like things in bite sized chunks.

A few months before potty training we spent (even more than usual) naked time outside. Each time I would see Parker urinate I made a big deal out of it to create an awareness of his own bodily functions. Up until then he hadn't shown any realization. "LOOK! You go pee pee!" I would exclaim as he was going, making sure he was looking at me and my point towards his stream. I would also make similar comments when I noticed he was going #1 or #2 in his diaper. Neither Parker nor Greyson were showing very many behavioral or cognitive signs of potty training readiness but this was a good step to create more awareness.

First, you need a child and a potty! Shew, so glad we got those basics covered. I recommend a bathroom that gets the least amount of traffic in your house or therapy center but isn't far from where you are spending your time. You need to be able to pop in there in a jiffy.

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We use this potty cover and an adult toilet. I prefer a cover as opposed to a small potty because that would add another step to our plan. Most likely if my boys were trained on a small potty - we would then have to partially re-train them to use the adult potty. I also need to be able to see inside to see if they are urinating. I know some children are more versatile and can use either.

You will be spending A LOT of time in the bathroom. More time than you ever have in your whole entire life so far COMBINED. This needs to be as fun for the child as possible. Be sure to stock and rotate games, toys, books, an ipad, a coin bank and coins, bubbles, and anything that can help keep your child engaged and distracted. I also make sure to have small toys available for them to hold so they do not mess with their junk. Yes, that is the appropriate medical terminology. (Junk- noun. Private parts.)

Most likely your child's legs will not reach the floor. You need a step stool tall enough for them to rest their feet. Otherwise, the less comfortable they will be- then the more likely they are to want to get off of that darn toilet.

You also need a chair for you because guess what?- you need to be comfortable too.

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We also use training underwear because it's thicker and holds more pee during accidents.

And for the final and practically MOST IMPORTANT tool (next to aforementioned child and toilet)- A REINFORCER! Something HIGHLY rewarding to give the child each time they have a success on the toilet. Parker LOVES the Hershey Drops you see on top of the toilet. The reward needs to be much greater than the pain associated with sitting on the toilet. Keep this item in the bathroom so you can deliver it INSTANTLY after a successful pee pee in the potty. It's also good for the child to see it so they can connect the desired behavior (peeing in the potty) to the reward. Grey doesn't like screaming and clapping and hoopla- so I kept it as tame as possible (man was that hard for me) and we made it more about the reward. "You go pee pee-you get chocolate. Great job going pee pee in the toilet." Parker likes the hoopla (like me) so I BRING IT. WOOOOO HOOOO!!!!!

WOOT WOOT!!! It's the GREATEST feeling in the world.


We do potty training boot camp -which basically means full throttle from day one. We go straight to underwear in the hopes that Parker will soon begin to instantly realize when he is urinating. Unfortunately neither boy is bothered or even seem to notice if they are wet or dirty. (Do not fret- Greyson is now 100% potty trained so this did not hinder him from catching on). We also let him hang out in his underwear while at home to make the whole process easier.

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Ask Parker how he feels about hanging out in underwear all day.

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You DO NOT need to wait until your child is verbal or has words for going to the bathroom to potty train. In fact, many typically developing, verbal 2-3 year olds will instantly answer "NO" when asked if they have to use the restroom anyway. What often ends up happening is either the parent knows they actually DO have to go, so they make them use the restroom, the child has an accident, or they will just run into the restroom at the last second on their own.

So do NOT let your child's non-verbal status scare you or stop you from trying. At first all you really are trying to do is time your bathroom breaks to catch as many successes as possible. Then you are trying to create a mental connection within the child so that they understand that this desired behavior (peeing on the potty) gives this desired reward (a handful of chocolate). It is much more a cognitive/behavior task than communicative at this point. As that cognitive connection is being made you will overlay communicative intent by using a picture or icon of a toilet.

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Start with a picture of a toilet- yours or a stock photo from Google. Laminate it- this suckers going to see a lot of use.  Have the child hand you the picture when it is time to go to the bathroom.

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Depending on your child's ability- have the child verbalize or approximate "potty", "Toilet", or whatever word you want to use.

Now you are ready to go for it. Make sure the child pulls down their pants, gets on the stool and sits on the toilet on their own doing. If they are not able to do this- then at first you will need to work on that skill. Adjust per any specific physical limitations your child may have. Pulling down their pants and getting on the toilet is an important part of gaining independence, learning self-help skills and the entire potty training experience.

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At first keep the time spent of the toilet short- just a few minutes. Keep track by setting a timer because the bathroom is a time-sucking vortex. If your child urinates, do this same thing in an hour (and thank your lucky stars and buy a lottery ticket). What most likely will happen though- is nothing. Tick tock tick tock- and the timer goes off. Then you try again every 15-25 minutes until the child is successful. Remember to keep the time they spend sitting on the pot fun and engaging. Today I was NOT allowed to sing songs or read books. Thank goodness for smart phones and Blue's Clues.

(Confession: today I also had him sit for 45 minutes. We hadn't yet had one success this week and darn it- It was going to happen- TODAY. I danced like a monkey and we watched videos and I fed him full of fruit snacks. But it finally worked and today Parker went pee pee on the potty for the first time- TWICE!!!!)

This is all beginning to sound a little too easy- right? So here's what USUALLY happens. You sit them on the potty and nothing. So you take them off. And despite the 15-25 minute subsequent bathroom breaks your child will still have an accident-(We've already had 6-7 today). Accidents are part of the path to success. You're just starting out- so don't consider it a failure- it actually helps you figure out how often(ish) your child goes potty. For Parker right now that is anywhere from every 30-90 minutes. Many children average somewhere between an hour and an hour and a half. Parental consistency is a very important factor at this stage. This is when it starts to get hard for me.

We then follow these loose rules:
Successful potty: attempt again in an hour. As time goes by- you can increase that number to 90 minutes if it is more in line with your child's frequency.

No potty: Try again every 15-25 minutes until successful.

Accident: Try again in 30-60 minutes, and then every 15 minutes until successful. If we keep having accidents we go completely underwearless in order to catch the pee midstream so we can then place the child on the toilet to finish.

We use pull ups for naps, nighttime and when we are going somewhere further away than 5 minutes.

This is hard stuff and I don't say that to deter you, I say it to encourage you. It's hard when you hear a parent of a typical child say- "Potty training was so hard- it took us a week." I know there are some of you that have been working at this for months and even longer without success. YOU ARE AWESOME. All we can do is get up every day, wipe the slate clean and try again. Like all hard things in life that we must move directly through- it's a mind game and our attitude and willingness to extract some of our ego and emotion is imperative to our child's success. It helps me get less frustrated when I remind myself that Parker and I are on the same team and he needs me to show him how this is done. Physically- it's not a big deal. You spend a ton of time in the bathroom and clean a bunch of dirty underwear. Mentally we can work ourselves in a TIZZY of frustration and fear that this will never happen.

I'm here to tell you, it will. And I can't wait for YOU to tell me that it worked for you too.

Tuesday, March 17, 2015

pizza and awareness

Vintage Life with Grey.

Today was my first day out of bed in two days. Sinus infection. Grrrrrr. My bones are starting to come back to life. Man was it so nice to be in bed though. I want to share a vintage life with grey + parker post from the day Greyson was diagnosed with autism. For some of you it will be a new read. It still makes me cry when I get to the part that says , "So world..."

So much of life's good shows up as unexpected. Except pizza. I vividly recall being pregnant with Parker. First- our announcement picture of Mr. Greyson...

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So, back to being pregnant. We ordered pizza and I was hangry. My half: mushrooms. Michael's half: Hawaiian. I grabbed the pizza out of Michael's hands while he was still conversing with the pizza guy. I run to the coffee table and sit down as I open the lid to reveal....


Michael walks in and I start to cry. (REAL TEARS). "What's wrong?" He asks fearfully. "Did they get it wrong?"

"THEY USE CANNED MUSHROOMS", I say, referring to said mushrooms as a dog shit equivalent. I can't handle canned mushrooms but it actually made pregnant me homicidal.

"Can't you just take the mushrooms off?" Michael flippantly asks as if it's NO BIG DEAL and my life isn't ruined. So I start grabbing the disgusting slimy little bastards to remove them- but they bring ALL the cheese with them. So then I just start grabbing ALL of my pizza half's topping by the handful, THROWING it on the lid of the pizza box while I am CRYING and saying, "Why would they use canned mushrooms? They used fresh mushrooms before. I (curse word) HATE canned mushrooms,"

"Do you want some of mine while we wait for a new one?" Michael asks, phone in hand already dialing the pizza joint. "I HATE HAWAIIAN!!!" I scold him. "Canned fruit on pizza is WORSE than canned mushrooms." (How dare he ask). Michael is on the phone with the pizza place by now explaining what happened and I am YELLING in the background, (YELLING) "Make sure you tell him I'm pregnant. Tell him I'm pregnant. Please tell him to hurry. Make sure you let him know I'm pregnant."

So that. That unexpected didn't turn out good but that story is in the minority. I thought of it because I got Tomato Bique (blah) instead of Cream of Chicken and wild rice (yum) soup tonight and I didn't even cry. (I wanted to). So next time life hands you a curse ball, handle it with grace (unlike me) and just wait for it to turn into good.

Oh yes, and THE POST I wrote almost three years ago today. 

Big fat hugs,


Wednesday, March 11, 2015

all human, all the same

Awhile back I was navigating the aisles of Target, and noticed an adult Special Needs group. I felt that instant familiar mix of happy/sad. My emotions and thoughts took turns rocketing up and down.

I was so happy they had this. This outlet, this community, this outing. Happy I could hear the chaperon telling them they had x amount of dollars which then continued what must have been a previously started discussion on budgeting money. Glad that the mentors talked to them in a regular grown up voice-no talking down or patronizing.

Sad because it starts that thinking- that smooth slope that calls to me and pulls me down to drown. That slide that feels impossible to claw your way up from. I could suddenly only hear the beat of my heart and my thoughts. What else do they do the rest of the week? I felt sad they didn't have jobs. Sad they were in the toy aisle and children's book aisle. Sad picturing my boys as grown ups doing this. Which of course, of course- as you know if you are a parent of a child with significant developmental delays starts the one, worst thought of all...

What will happen to them after I die?

The only question that sometimes keeps me up at night. The question that feels worse than my worse nightmare because I will never ever wake up from it. The question that makes me think that all of us dying together in a plane crash is an amazing dream come true. Because the alternative... The alternative feels like Satan and a panic attack and instant tears that feels like throwing up and burning poison poured on my soul. I don't even know where they are and what they are doing in this awful future. They are in a state institution and they are being abused and they don't know what in the hell is going on and why Michael and I left them. And Greyson has no Pop Chips and hot dogs and Parker has no one to snuggle with in the morning and no one to speckle his entire face with kisses twenty million times a day. And then they die and no one goes to their funeral.

Yes, those thoughts. If we spent HALF the time coming up with a plan INSTEAD of worrying I think we would be so much better off. Let's come up with a plan instead of just sharing our fears. What do you say? We must be the change. 

As I was checking out part of the group was at the concession stand. One gentleman in the group was buying a drink. I watched him earnestly and with significant effort count his money out on the counter. I could see him using the skills that were taught to him that still seemed foreign. Thank you, he said, with the briefest moment of exhausting eye contact. I was so proud of this young man, and I was fascinated. He turned around to sit at a table with his purchase and I noticed it. My high instantly fell. His fly was down. I was crushed. Should I tell him? Despite the coursing of heavy emotions I knew that wasn't appropriate. Should I tell one of the chaperones? He looked so happy. I was mad at the chaperones. Why didn't they notice that like a mother would? Why did they let this happen? I left the store and got into my car and started to cry.

The way I was crying was too harsh of a reaction to simply be about a man's fly being down so I worked to detangle myself from the string of feelings that led me to here. Suddenly a beautiful and needed voice of reason stepped in. Chrissy- that man - the one who paid for his drink all by himself and remembered to say thank you and use eye contact- he was happy. Yes, he was not only happy- he was proud. There was no mistaking either one of those things. He glowed. 

And I wondered- Who am I to feel sorry for someone who is happy? What I was feeling wasn't sympathy or empathy. Not in their appropriate vehicles- it was more like - I hate to say - pity. Because pity carries this air of superiority. Like I am together enough to know that having your jeans unzipped in public is not acceptable- and this poor man doesn't. He didn't remember to zip up.

I called my best friend Annie- and started to cry while I recanted my story. Yelling at myself while I was at it. "I have no right to feel sorry for this man. I've totally forgotten to zip up my fly. We are the same- human. That doesn't warrant feeling sorry for him. Shame on ME. What if people feel sorry for me? They aren't allowed to feel sorry for me. They aren't allowed to assume that this life I live is a shame or something you can tsk tsk. I have no right to label kid's books or toys as age inappropriate. I have no right to deem any of their happy as inappropriate or tsk tsk worthy. It's insulting."

And I've had comments made to me that felt awful. They felt like pity. They felt insulting. Most recently a woman who knew the boys had autism approached me. She said- in that slower, near whispering voice- My grandson has autism- I understand how hard you have to work, while she shook her head back and forth. Something about what she said (IN FRONT OF GREYSON) made me want to punch her. I felt an instant rage I didn't fully understand. I don't work hard, I retorted. HE is the one that works hard- and he's amazing. I'm just the mom- cheering him on and taking him where he needs to be. HE works hard.

Am I sorry that my boys have autism? Absolutely. I wish there was a magic wand that could take it away. But am I sorry that I am their mom and that God gave us this story? ABSOLUTELY NOT. Never ever ever. God gives us all roles in life. He gives us skills to do the best we can with the story we are living. It doesn't always feel that way- but whatever it is you need, they are in you already. You have what it takes. And if you don't have what you need- you have the skills you need to change. I've never met anyone who didn't. I've only met people who didn't believe they did. God gives us gifts that can easily be mistaken as challenges and hard times.

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I am so blessed. So grateful. So lucky. So proud of the story we were given.
And I've also had people make comments that were compassionate and felt like understanding- not pity. Comments that spoke to the struggles my boys sometimes have to endure- but struggles that do not define them. It's so hard to describe what makes them different. I read somewhere that pity comes from a place of superiority, and sympathy comes from a place of understanding and appreciation. A place in our core that reminds us that we are all human, we are all the same. 

I thought about how much my thoughts have changed since knowing and loving Greyson and Parker. I just didn't know or understand the world in the way I do now. Most obstacles in our lives lead us into accidentally finding ourselves. Our compassionate, happy true selves. I realize I have no right to pity someone who is happy. No right to judge their happy. No right to do a single thing- except focus on the good in my life and grow my own happy. 

Thursday, March 5, 2015

only one shoe

Hello, this is the school nurse. We have Greyson here in our office. 

My breath catches, then stops, and the rest of the world stops making sound.

He's alright now, but I want to let you know he's been bitten. I drop to my knees. My silence is punctuated by gulps of air so I can sob.

Hello? Are you there? He's okay, he's just been bitten on the stomach- but it didn't break the skin. He was crying so we got him calm and we are trying to ice the area. But he's ok- really. 
I was aware my overreaction was severe but I couldn't take one more single thing. I was scared and confused and my heart was breaking a bit more with each day that went by. Greyson was in an autism preschool program called PALS, and it was starting to feel like we were in a nightmare.

Yes, I'm sorry. I'm here. It's just... He can't talk and I'm worried he's not ok and he probably doesn't understand what's going on. 
Can you adequately explain the terror and protectiveness you have the ability to feel for your nonverbal child? Are there even words invented to explain it? Because I have never come close to finding them. 

It was the second time he had been bitten. Add to that an unexplainable black eye.

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Greyson's first day of preschool, August 2012

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His black eye

Things felt wrong from our very first day there. I chalked it up to me. He was only three and I wasn't ready for him to be gone at preschool five days a week from 8:20-1:20. The classroom age mix was 3-6 years old. That's too much of a gap for general ed- so how in the world would it work for children with autism when each child is so vastly different from the next? I wasn't sure if it felt bad because it wasn't the preschool experience I expected,  or if it felt bad because it wasn't right for us.

Can I volunteer in his classroom? I asked the teacher. No, she responded unsympathetically. Every student in this room has an IEP posted and it is a private legal document. You can't be in here without advance notice and you need to be accompanied by a Director or the Principal. I suddenly felt stupid for even asking. Angry I was being deprived of one more typical mom thing.

On the second morning of school I parked and walked him up to his classroom while Grey screamed and attempted to lie flat on the ground. For your convenience you can just bring him to the school drop off lane in the morning, I was told. Oh that's ok- I would prefer to park and walk him up until he's comfortable here--that way he realizes I am bringing him here on purpose, and not just letting him get yanked out of the car by someone we don't know. 

Okay, you can do that but an aid will meet you on the sidewalk. Unfortunately the parents aren't allowed in the class as to not disturb the other students.

It was obvious that I was not welcome in Greyson's classroom.

Other than basic information and testing results the new school didn't ask me for information on Greyson. Even my friends with children in general education filled out information about their child on their likes, dislikes, and skills and strengths. A couple of weeks after school started I created lists of programs and skills Greyson had mastered during Early Intervention, as well as the things he was currently working on in his home behavior program to share with his teacher. I made an appointment so we could review it together.  I also brought his Speech Teacher his current goals and capabilities based on the year of one-hour, twice weekly Speech Therapy sessions we both religiously attended. I was especially adamant that she knew that Greyson was capable of making three word requests. I want drink. I want car. Grey tries to get away with the least amount of language possible and I didn't want that to happen at school. I wanted to make sure they knew what he was capable of so they could continue his learning from there.

Grey did so good today, he Speech Teacher reported. He said ball and car and mountain bike. He said mountain bike? I asked incredulously. (it's not possible)  Um- did you tell him to say mountain bike or show him a picture of a bike and tell him what it's called? 

No, he just said it all on his own out of the blue- 'mountain bike'. 

I'm curious-  if he says car- does he get reinforced or rewarded? 

Yes, of course, she said smiling as if that was the answer I was looking for

Ok- can you please make sure when requesting preferred items that he uses three words? As I mentioned before he tries to get away with as little language as possible and I don't want him to regress.

Greyson is stubborn and hard to keep focused, but he is also a great and consistent learner. He tests all new Teachers and aids to see what he can get away with. He responds best to firm yet loving Teachers. During his year of at home Behavior Therapy they only had to stop one program due to Greyson being unable to get it. 

However, all the feedback I got from the PALS classroom just didn't describe Greyson. It was obvious they had one way of teaching and he just wasn't fitting their mold. No one was able to figure out what made him tick. 

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We've had many good autism teachers and they just keep trying new methods until they figure out the Grey's motivation and preferred rewards. And some of the very best Teachers can figure out things about him that even surprise me. But at this school every week the teacher would have to stop a lesson and start a new one because Greyson wasn't able to learn or demonstrate his knowledge. 

After a couple of months Greyson stopped using three word requests at home and would only use one word: Juice. Car. No. Chips. And when he wouldn't get the item he would scream them at us. JUICE!!! CAR!!! NO!!!! CHIPS!!!! After a couple of more weeks he would only point at what he wanted and scream. Then even the point vanished. He could no longer label colors or items he once knew. All the hard work that was poured into him during Early Intervention was gone. I was concerned so I asked for weekly written updates including any information that would help us reinforce the lessons they were working on in school while we were at home. Every few weeks I would receive an update. Here's an example of one:

Good afternoon,

Hope you had a good week!  Looking toward next week’s programs; Greyson will continue previous programs with the exception of his “Come Here” program and his program for matching object to object which have been moved to maintenance.  I will be adding DT: Lesson 8: Matching: Picture to Picture

My head was spinning. Is that English, I wondered? Greyson was vanishing before my eyes. Again. First from autism and now from school. I would pick him up from school in the afternoon and it was like he didn't even recognize me he had retreated so far inside his head. I called my friend crying. I cried a lot then. I still feel sick when I drop him off every single morning. It's been nine months. Shouldn't that have gone away by now? I asked her. I ask the school for information and I don't get anything. I don't understand what's going on and 
I don't know what to do.

Have you ever thought about taking him out of school? my friend asked. She knew our concerns and how bumpy this road had been. I had thought of it - but only in my daydreams. Isn't that illegal or something? There were no private schools for children with Special Needs around. Greyson didn't yet have the ability to mainstream in a general ed classroom either. Since he had turned three, he was no longer eligible for the services provided through the state's Early Intervention program. Our options were limited.

But I couldn't watch him fade away any longer, and her words were the push I needed to make change. I was going to risk it and pull him out of school. I needed to come up with a plan built for Greyson. A plan that would help bring him back and hopefully one day- help him learn again. We started 20 hours a week of at home Behavior Therapy. We sent him to a private preschool one day a week with a typical special aid shadow that we paid out of pocket. We started private $85 an hour speech therapy again and would alternate other activities like horse back riding, swimming lessons and typical child play dates and outings. Some nights I couldn't sleep, I was so scared I was doing the wrong thing. 

After a couple of months Greyson started to come back. So slowly at first. And after a few months I finally experienced this blissful exhale of relief. We were on the right path doing exactly what we needed to do, a fact I could feel in my bones. Before I had been desperately searching for a path worn in the grass for us to follow- but I realized- it was up to us to wear our own path. For the past two years we have done our own thing, and Greyson is thriving, still stubborn and so happy.

Greyson turned five nine months ago and I knew it was time to explore schooling options again. He needed the structure and curriculum that only five days a week school could provide. I was scared but ready. I called and spoke with the Director of the PALS preschool program and voiced all of the concerns we had about the first PALS classroom we were in. We set up a tour for another school in the PALS program, hoping that this site would be different. As soon as we walked in the door Greyson reached his arms up to Michael saying, I want up. My heart was thumping. Please let this be better, I repeated in my head over and over.

There wasn't a toy in sight. There were no days of the week or colorful art or the children's names decorating the wall. Having autism means that my son is a professional learner and will be doing extra learning all of his life. When a child is only five, learning needs to look like joy and fun. This classroom looked more like a large storage closet. It felt like an insane asylum. A row of children sat in front of a Signing Time DVD; none of them engaged. There was a child strapped into a chair screaming, setting off the other children to do the same. Another child was yelling and groaning on the floor. My hands were shaking and I was rapidly swallowing so I wouldn't cry.

Home, home, home, Greyson repeated over and over.

Do you have any sensory activities /rooms for the kids? we asked

We have a weighted vest, the Director replied.
Do you do Speech Therapy one on one? Greyson does much better that way.
No- we usually do speech in a group setting. It works better that way.

They stood behind every reason they gave me, just like at the previous site. And most of the answers were - This is how we do it. This is how it works for children with autism. How could these professionals run an autism program and not even realize autism doesn't work that way for anyone? There is no one size fits all.

We finished the tour and walked to our car. The air was thick with silence until I started to cry. "He can't go there. We can't make him. That was so awful. It's a place you go to dump your kid for five hours- not a place you send them to learn."

"No- I agree," Michael said. "Greyson was gripping me so tight the whole time we were there... he remembers".  Michael's voice started to crack as his words trailed off.

For months we researched and asked everyone we could. I asked Teachers, and parents of children with autism. I prayed. I hoped. One evening we decided we needed to move to a completely different neighboring school district. Like pulling Greyson out of school- It was another moment filled with hope- but even more fear. What if we do all of this and it's an awful idea? What if we end up worse off? But we were ready to go for it and so we did. We listed our house and within a month it was sold and we had purchased another. Everything was moving so fast. And one month ago we started Greyson at a new school in an autism classroom. This week we had our first 30 day IEP meeting- Individualized Education Plan . An IEP is mandated by the Individuals with Disabilities Education Act (IDEA). The IEP describes how the student learns, how the student best demonstrates that learning and what teachers and service providers will do and provide to help the student learn most effectively. 

And with tears in my eyes I will tell you- this meeting was incredible. I finally felt like I could stop waiting for the other shoe to drop. This is it- and it is good. I looked around the large rectangular table filled with people willing to do what it takes to help Greyson succeed. It was hard not to cry. This environment has exceeded our expectations. The school does 1,000 things differently and in the best interest of how each individual learns. They have a whole room dedicated to gross motor and sensory stimulation- which really helps kids like Grey who need it to stay focused and calm. The way the Teachers describe Greyson and his learning process shows that they get him. The goals they set for him are hearty yet realistic. They took turns speaking at this meeting and you can tell they want him to succeed- and they will do everything they can to make it happen. His Teacher told me that he's the perfect fit to their classroom- and that they didn't even know until now that it had a Greyson shaped hole until he came along. His Teacher gave us a journal notebook to keep in Grey's backpack so she and I can communicate back and forth. The greatest part- Greyson walks into his classroom happy every single day. He may not talk but he can communicate --and that right there is the greatest sign. He likes going there- and because of that so do I. 

I hesitated writing this post for years. By nature, I am a fixer- not a complainer. But I feel a need to tell this truth. To admit that there have been scary decisions we've made that I've doubted and been sick over. To show that something bad can turn into something amazing. To remind you to trust your gut instincts. I believe that the people in the PALS program have good intentions but outdated practices that desperately need to be changed.  For Greyson's privacy and safety, we do not share where he currently attends school. 

I look around at our new home and realize this is exactly where we are supposed to be. I feel like I dreamed this house and school into being. God has been here every step of the way, opening the right doors and closing the wrong ones. I frequently tried to walk into those closed doors and got hurt. I'm realizing now that's because it was time to walk away.

And Greyson is doing amazing. It's so easy to forget that most set backs are temporary.

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Just recently he started to be able to write his name.

And I've also realized that the journey isn't about writing his name or mainstreaming in a general education classroom. It's about the tiny little million things he does every day. The tiny things that lead up to these big milestones and miracles that blow us away. 

It's been a hard journey, but one that I am so proud to call ours.