Summertime Rulez

Ahhhh Summer!!!!!

The time of year where we can let the bedtime routine go. The time of year when the sun is hot, the pool feels welcoming, and fresh fruits taste amazing! This is the time that most of look forward to all year!

But, for families of autism, summer can be the most stressful, nerve-wracking, patience-disturbing time of all.

Our kiddos with autism crave control and structure. It is in their DNA. This is why they love school so much. School is a bubble. It is a test tube of endless lists and tasks that are implemented by teachers that are trained to do such things. Home is a battleground of pesky siblings (who know the autistic's every button to push) and of over-tired parents who are just trying not to drown in their own problems of keeping it all together.

As one mom said to me in tears, "why can't I seem to get it together enough to have the good report that my son's teachers seem to have of him?" In other words, why do our children seem to behave better at school than they do with us at home?

I have a few theories about this:

-First of all, as stated earlier, school has all the resources needed to set these little people up for success. There are at least 2-3 more adults in the room than at home. (hello!! Wouldn't we all love at least 4 more sets of hands at home?) There are other children that are NOT related to them that can distract them from whatever is bothering them in the moment. (aaaaauuuuhhhhhh!! This shirt has a tag in it!!) Also, this is what these certifiably insane people have SIGNED UP to do in life. Yes! They have signed up to teach/corral/herd these children by CHOICE! So that means that they have had more training and (hopefully) more patience than you ever will. They can be almost perfect with scheduling because they have to in order to keep more than three children alive!

-Secondly, our children will always be more well-behaved with strangers. This is a good thing! We want our kids to act out with us because then we know they feel safe. We tend to "show our butts" when we feel like we can. We are our truest selves with those that we know will not abandon us.

-Thirdly, these teachers can do all of their schedules, ABA appropriate rigors, and rule-keeping because THEY GET TO GO HOME AT THE END OF THE DAY.


Let's just cut to the chase. Summer is hard. Breaks are hard. So here are a few things I have found to help make it through.


1. Every summer when Liam was younger I poured over websites of churches and camps to see who would be able to handle my little bundle of joy. Sometimes my searches came up short, but I eventually landed on a YMCA camp through Easter Seals. This would be more geared for elementary age children through high school, but well worth looking into to see if they have a program that would work for your child. We also did Vacation Bible Schools-several of them! It could be that a particular church has a ministry for special needs children. Or, maybe you could volunteer to go with your child and act as an aid for others. Obviously, if you're looking for a break, that is not the best option, but if you are looking for something to get you and your child out of the house, it could be ideal.

2. Schedule your down time!! This is my least favorite. By now, if you've kept up with this blog you know how much I hate schedules. But, for everyone's sanity, I would at least try to have a skeleton of a schedule for each day. Your schedule may have a large amount of digital activity on there (i.e. THANK YOU, JESUS, FOR IPADS!) This is okay. We're in summer mode and their brains are not going to rot if they watch several shows in a row. This is parenting bootcamp, let's not kill ourselves here.

How do they come out of the womb knowing how to  do technology?!

3. (in the same vein) Let go of Mommy/Daddy guilt. This may be your hardest task yet. Let go of trying to have it all together. You're exhausted, and so are they. If you need a nap, plug in the iPad and let that be their quiet time. Stop comparing yourself to their teachers and other parents on Facebook. Trust me, they're using the iPad too. That's how they have time to post on Facebook.

4. I realize that not all parents may have the luxury of taking a trip. Maybe a trip is the worst thing in the world for your family. Maybe it's just easier staying at home. BUT, every summer, we would plan a trip to the beach with my parents. I can say that I have been blessed with two people who, are not perfect, but love my children well and do pretty good with having them around. They have had to learn, like we all have, to roll with the punches and parent a little differently than maybe they did with me. This is a week that we always look forward to because it allows us to get away from our norm and rest. I encourage all of my readers to take the time to find rest--and water. Water is healing and  may be the one thing that helps calm your little one.

Nashville Public Library Story Time

5. Find something to do once a week that can become a summertime routine. One thing that we used to do each week was go to story time at our local library. Nashville has a beautiful library in the downtown area and has an award-winning children's outreach through their puppetry program. This is a free program and they have a beautiful outdoor area where you can picnic and kids can run around without people staring or judging you for their squeals of joy. I would encourage you to find something that you can do as a family once a week that helps both of you. It also teaches your little one to adapt to the outside world. They have to learn how to sit and behave at some point, and this could be a safe way to do it.

6. EAT LOTS OF ICE CREAM

7. Remember to laugh at yourselves.

8. Phone a friend.

9. Let go of household chores for maybe one day. (or 5)

10. Be kind to yourself.

Wake up. Repeat.

First Chair

In the hustle and bustle of life, we forget to feel. Well, it's not exactly like that. We just forget that we have all of these emotions pulsing through our veins at any given point.

Yes, that's right. Those things you thought you were pushing down into your belly don't exactly go anywhere. They tend to just float right back up to the surface. Those pesky little things that were created to tell us the temperature of our emotional selves continue to bounce all around us. And, as my mentor said, "If you try to get over 'em, you end up under 'em."

And, alas, the more work I do on myself (by way of counseling others and my own therapy), the more I find this statement to be true.

I found myself out and about a few nights ago, celebrating my best friend's birthday. We had amazing wine, great food, and hilarious banter! It was a fancy restaurant and I was dressed up both inside and out. I had my "outfit" on and I had my witty Self on that night as well.

On the car ride home, I was ecstatic to get to see Liam and tell him how proud I was of him. He had made first chair that day in percussion. First chair is as big a deal as any in our household. This is because the phrase starts with the word "FIRST", and as I have commented on many a blog, this is the word that sends my little guy through the roof!! He both loves and disdains competition. It excites him and freaks him out at the same time. He wants to be first every week, but there's always someone a little bit better than him...until this week.

The idea of chairs in percussion is you must play a scale on marimba the fastest without missing any notes and playing it in time. It occurred to Liam's friend, Zach, (see the blog "Sleepovers") that all of the other players had played the piece at 135 bpm, so Liam should bump it up to 140! Liam reluctantly decided to follow his advice and speed through his scale at 140.

He was so nervous after he played, he ran to the practice room and turned off the lights, waiting to see what the results were!! The pressure was just too much!

The list was typed up and printed off...the band teacher slowly walked over to the wall and slapped the results up so everyone could see who got what.

And there it was...Liam, after almost 7 1/2 months of school, was first chair.

The coveted FIRST CHAIR-I picture a throne in my head. 

So, you can imagine my excitement for him! I couldn't wait to hear the play by play and get a high five. I couldn't wait to bask in the moment with him and see his face light up when he told me about it.

Admittedly, I did get home a bit late, but I knew he would not be fully asleep. So, I tiptoed up to his room to have our big moment. 

"Liam," I whispered, "I am so very proud of you getting FIRST CHAIR today!" **enthusiastic, but still tempered whisper**

Instead of rolling over to give me the high five my heart clearly wanted, he shot up so quickly in his bed, that he smacked his head into my forehead. It was most definitely going to leave a mark- on both of us.

"MOM, WHAT ARE YOU DOING- GET OOOOUUUUUTTTT!!!!" **enthusiastic teen rage in loudly audible voice**

"FINE!!!! I WAS JUST GOING TO SAY HOW PROUD OF YOU I WAS, BUT NOW I'M NOT! GOD, YOU RUIN EVERYTHING!!!" **enthusiastic teen rage coming out in a mommy's body**

Yep. Not my proudest moment. I was hurt- both physically and emotionally. I was angry. And I was lonely. 

In my counseling office, I am teaching my clients to use feeling words instead of the all-too-popular responses like, "meh!", "frustrated", "stressed", etc. These words do not hit the heart the way that anger, sadness, shame, and lonely do. They just don't. So often we use these words to hide the very things that we NEED to be feeling. So, the very things that I am teaching my clients have to be put in to practice in my own life. (oy veh!!)

It's much easier to say that the traffic was mildly irritating, but my actions spoke much more like rage when I honked and cussed in my vehicle. Or, when I try to shrug off something important in my life and call it a "blah" day, I'm more likely extremely sad. I'm in grief. 

My response to Liam was anger, but it came from a deeper place of hurt and longing for relationship with him. When I am honest with my feelings, it puts me in touch with my soul. It allows me to know ...well, ME! I can then begin to know the deepest places in my heart that need healing, that need restoration. If I am constantly using other words to describe myself, I am leaving myself on the operating table of life-bleeding and, sometimes, without a pulse. 

When anger creeps in (as it does a lot of the time), I can begin to see the roots of other emotions that are trying to drive the bus of my heart. When I own up to it (what is actually going on inside of me), my heart/soul/Self then drives the bus. Then, it is I who sits in the "first chair" of my own heart. And I can begin to help my emotions sit in the passenger seat, continuing to give me clues to who I was made to be.  

There will always be a tinge of loneliness, hurt, and anger as I live with a child who has very little capacity to see me. But, on those rare occasions when he does see me, I will relish it! I will know beyond a shadow of a doubt because there are no mixed words in autism. 

There is only truth.

Sleepovers

We had our first sleepover....

I was so nervous to ask. What if this boy says no? What if he was just being nice to Liam at school, but had NO intentions of striking up a friendship? What if he says YES? Then what?!! 

I wouldn't know unless I asked.

For months, Liam had been talking about his friend, Zach, that happened to be in band with him. Liam talked about how cool he was and how he was always getting "first chair" in band-playing tests. Because, with Liam, everything is a contest. I have never met someone more competitive than my child. I don't know if it's better or worse that his mother simply doesn't care about winning per se. I just don't have a competitive bone in my body. So, maybe we cancel each other out? - or, maybe his competitive nature makes me want to drink...not sure.

But, in his talking about Zach, there was a longing. A longing to have a friend. He saw his brother have friends over and spend the night out- why couldn't he? And, I don't have to remind you of all the years I have been writing about birthday parties. Birthdays are painful reminders that he, more often than not, doesn't always get those invites. 

So, I prayed. I have been praying this prayer for a long time actually. Lord, just one friend. That's all. I would love it if you just provided one person that would see Liam for who he is and accept him-nay, ADORE him the way we all do. 

(Now, I don't want to freak this kid out. I mean, I'm sure more than one friend will come along....hahahahahahahaha...seriously, though, will you be his friend???!!!)

So, needless to say, his mom said yes, and (gasp!) that Zach was really looking forward to coming over! 

When I told Liam about this, he was beside himself! Pacing, eyes staring off into space as his wheels turned thinking about the possibilities of the slumber party events. 

I imagined his thoughts were something like this:

"First, I'll show him my video games and how I like to play them. I will win every game we play. Then, we will go outside. Then, he will watch me play a computer game. I will win all of those as well. The end."

The whole back and forth thing hasn't been nuanced quite yet in our house. He would prefer if everyone just did exactly what he wanted to do the entire time, no questions asked. We're still tweaking that one.

(hmmm...sounds like a few adults I know as well...)

So, in an effort to have a back up plan in case Liam sat in front of a screen for 6 hours while his friend twirled his thumbs, I decided that we needed a destination. 

"Where do you want to go with Zach when he comes over?"

"Chuck E. Cheese".

I panicked. Do 13 years olds still think Chuck E. Cheese is cool? Doesn't Charles du Fromage (what we used to say in order to "hide" it from the kids) peak around age 9-10?

I reluctantly agreed. 

Yes! You are!! 

The day came for Zach to come over. Zach rode the special ed bus to our house like a champ! Didn't even bat an eye! He earned major friend points in my book for being willing to be seen on the not-so-short bus. (I don't know about your school, but the SPED bus at ours is SWANK! It is not short, and it is really nice!)

He walked in, confident, but not too much. He was great with Liam. He was patient, kind, funny...do I sound desperate? Because I totally am. I had to tell myself to quit asking him if he was having a good time, or if he needed another snack, or if I bought the right snacks, or if I needed to pay him money to stay. (Okay, I didn't ask that, but I thought it!)

The thing of it was, that I think Zach really DID want to be there. He knows that Liam is different than he is, but it's not a deficit to him- it's a bonus. He totally thinks Liam's ways of doing things are funny. And, he gets a kick out of seeing him excited about a video game, or an 89 yard touchdown on YouTube. 

He also knew when to set boundaries with Liam and when to let the small stuff fly by! He knew that Liam would be anxious about what time they would be going to bed (there would be no improvising or playing "outside the scale" on the schedule!), so Zach said, "you know what Liam, let's play one more round of USA Soccer on Xbox and then go to bed at 9:30"! 

I have to admit, I was high-fiving myself at that point!! 

Call it what you will, but as much as people my age want to complain about the new generation coming up as being emotionally stunted from technology, or having issues with socialization, or even being exposed to too much too fast, I have to say that there is a new wave of compassion and empathy that my generation missed out on. 

These kids have been exposed to children of special needs from the get-go. No longer are the SPED children sent to another building to be "dealt" with. Kids with autism, Down Syndrome, cerebral palsy, and other neurological disorders are included in the mainstream classrooms. Kids today most likely have seen a child with autism have a nervous breakdown in the middle of class, or watched a child in a wheelchair struggle to move around a classroom. And, because of that exposure, they are not intimidated by differences- they embrace them. I do not think I would have been that patient or kind as a middle schooler. I was much too impressed with myself to give unconditionally to others with differences. So to now see these kids getting involved and helping their peers is so very inspiring!!!! 

Now, I do know there are sad stories of bullies and mean-spirited kids who have taken advantage of this inclusion of SPED children. I do not pretend to believe that there will never be someone who will be mean to my son. But, the overwhelming sense that I have gotten from all the classrooms my son has been in is that once his peers know what is going on with him, they are ready and willing to help him along. And Zach is a great example of someone willing to go the extra mile! 

His dad picked him up the next morning, and we have seen this family several weekends this fall at various school events. Zach even plans to have Liam at his house this weekend, Lord-willing! :)

The other day I asked Liam about Zach and his friendship with him. Liam replied, "Sometimes Zach disobeys me."

(Sigh)

Like I said, little tweaking here and there.

Baby steps. 

My hope is there will be more steps, and more friends like Zach. 

And maybe, just maybe, this journey won't be so lonely after all.

Italian Siesta

I came home yesterday the same way I do most days. Armloads of Trader Joe's bags, exhausted and wiped out. My body felt so tired and depleted, I had to lay down for a quick power nap.

Unfortunately, this is not uncommon for me. I was recently diagnosed with something called Hashimoto's disease, which is a type of hypothyroidism, or Japanese for "no more happiness". Actually, I don't know what Hashimoto is named for. Maybe it was for the Japanese god of narcolepsy. I don't know. What I do know is for the millions of people who have this disease, it is crippling. The symptoms are unending tiredness, hair loss, weight gain, and endless tv watching.

I have always been tired. An unpopular personality trait in a world that says that napping is an abomination and being tired is equal to weakness. Our culture frowns upon siestas, while the rest of the world naturally shuts down their businesses between the hours of 2-4 to rest, (I'm looking at you, Italy!!) cook their evening meals, and catch up on life. Quality of life is not taken into account in our fast pace, "gotta strike while the iron's hot" way of existing. It is of no wonder that our adrenal glands are screaming at us to slow down!!

And, us mommy's of autism? FUGET ABOUDIT!!!

This actually looks good to me right now.

I would go so far to say when there is anything "extra" in life that you have to deal with in the hustle and bustle of life, it is exhausting. Mothers and fathers dealing with other special needs, learning disabilities, health conditions, ADHD, even a child with emotional instability, can be that extra thing that pushes you over the proverbial edge. A friend of mine has a child that has difficulty just getting along with other children-it is something extra that she has to deal with on top of the other children in her family-and it is exhausting!


And we hate to begrudge our "extra heaping helping of hard" child, but sometimes we do...let's be honest!

 As I was laying in bed, life was still happening around me. The groceries needed to be put away, phone calls kept coming in, Liam was coming in and out from playing outside, Walker was studying and doing homework. I felt guilt for not exactly knowing where my child with autism was. I felt shame for not really knowing if my teenager was really studying or playing video games. And, I felt irresponsible for not remembering if I put the milk away or not. But, I quickly shoved all of those pesky emotions down for a few prized moments of sleep.

I woke up groggy and out of it- the worst feeling at the bewitching hour of 5pm. (see Bewitched!) I began researching essential oils that would help with hypothyroidism, exhaustion, and crankiness (funny, they don't have one for the that!). I began to think about all of the other supplements, oils, and holistic medicines that could help my kids. I started down a rabbit trail of research for autism, and alternative medicines used for attention and focus. Fifteen minutes later, I was overwhelmed thinking about adding something else to our already full routine.

And this is when it struck me: I CANNOT HELP MY CHILDREN WHEN I AM DEPLETED!!!!

I CANNOT GIVE TO THEM THAT WHICH I DO NOT GIVE MYSELF!!!!

Isn't this our plight? We spend so much time thinking, loving on, and doing for our own fold when we have nothing to give. I must be willing to research things that will help ME, so that I can, in turn, give to those I love the most.

It's the old, "put the oxygen mask on yourself before you put it on your child" mentality. If we are sucking for air, we cannot possibly be any good for those around us.

As Brene Brown said recently, we all wear exhaustion like it's a badge. We can all one-up each other with stories of our heroism and valor of staying up all night to bake cookies, holding down 4 jobs, stirring dinner, and sewing Suzie's ballet costume, but we cannot tell you the last time we actually felt good.

My son's therapist told me recently that in all of his years of practicing, this is the most anxious group of children he has ever seen. They are all medicated because we expose them to adult-like pressures of having so many balls in the air, that they cannot manage.

IF I AM DEPLETED ALL OF THE TIME, HOW CAN I TEACH MY CHILDREN WHAT IT MEANS TO BE RESTFUL AND PRESENT???

If I am overextending and not paying attention to my own exhaustion, how can I teach them to listen to their bodies?

It's time to stop. It's time to rest.

I closed all the tabs of my computer, and opened one window to ask questions about my own disease on a forum. I got helpful responses, and now it is up to me to take the plunge and try a few things that may work.

I think it may be an uphill battle to introduce the 'Italian siesta' into our culture. We are pretty stuck in our ways as Americans. But, I can introduce that concept of balance and holistic living in my own corner of the world. It begins with me.

Gladness

The weather is FINALLY warming up after a brutal winter over most of the United States. Even people in LA have experienced torrential downpours that are out of the ordinary for CA. (don't worry, I do NOT feel the least bit sorry for them!) The weather in Tennessee is bipolar at best. It is often said if you don't like the weather, stay until tomorrow. Because it does so often feel like that. My birthday was a few days ago and it was a wonderful 75 degrees, only to wake up this morning to a cool 28. It will make you crazy as you get excited for spring around the corner- only to be disappointed that you have to bundle up again.

This picture sums up our weather experiences down here!

Speaking of bipolar weather, the mood of my preteen has been an unpredictable map of highs, lows, sunny skies, rain clouds, tornadoes, and spring delight. Each day I wonder which one I will get. The one thing that is consistent is the spring delight rarely shows up. 

Now, I am not naive to think that this is not normal behavior. I do know the stats on preteens. But, it doesn't make it any easier to navigate. 

The truth is, I long to connect to my son. There, I said it! He has autism, and as my oldest pointed out, if you look up the diagnosis in the DSM "connection" and autism are not in the same paragraphs. If they are, the words "lack thereof" are some place close by. 

This is difficult to me, as this is probably the most important thing in my life- my connections. I cherish them. They are my life-force, in many ways. That is just the way God made me. So, not having a connection to my offspring is a little difficult for this attachment junkie. 

Sadly, he is growing up. So that means he is pulling away. Before, he would ask me to tuck him in the bed or read to him. Even if it was slightly 'robo-tronic', he still asked for ME specifically. And, that connected us. 

Now, he has his after school routine of playing alone outside or playing video games alone. Or, he searches alone on the computer for his latest obsession, whether it be funny lines from Sheldon on "Big Bang Theory" or a long touchdown run by an Alabama player. I can always know his thought process when I look up his Google search history. 

But that is where it remains. Google history. 

The key to my son's heart. 

He doesn't want to share with me his thoughts about friends, life, love, and hurt. He shuts me down when I ask how his day was or probe into his middle school brain. And by probe I ask him what friends he has in his class. 

Now, some of you reading this will be tempted to "normalize" things and tell me that I am simply dealing (as stated earlier) with a preteen. Preteens are known for their sudden distaste in all things parent related. 

I like this picture for Denial.

I would tell you that you would only be partially correct. And, not to mention, shaming. This is not just your average preteen mood swing or distaste- this is a pattern, not an event. And, being the parents of these children, we know this in the back of our minds. We know that this is a pervasive pattern and not a 2-3 year 'season'. Our hearts are all too familiar with the disappointment and letting go that has to occur with autism. And, please, don't be one of the "those" people who say "well, at least he..." (see Brene Brown's brilliant take on that phrase in this clip). 

There is not much to say to make things better. I must grieve this part of autism- otherwise I live in complete denial. As I have said many times in this blog, life is not easy, and the sooner we can accept, feel, and face this reality, the sooner our true JOY can be felt. 

Then when he does do something out of the ordinary, it is absolutely felt. When he sees me, or touches my face, or hugs me without prompting- those are the joy moments. Those are the times when I am touched deeply in my soul. It does not take away the pain, but the pain gives way to true gladness. 

TRUE gladness. It is a rare gift. But, it is something we all long for in our hearts. I believe the desire for true gladness was put into the very fabric of our being. 

Gladness

When I look at this photo my dad took this year, I see Liam enjoying true gladness. He absolutely loves tossing the football up and making "touchdowns" over and over again until he can barely stand up. It reminds me of my own desire and the places where I am able to gain access to this rare gift. 

But most of all, it reminds me that some things will change. It will not always be cold or rainy or unpredictable.

One thing we are promised. 

The spring will come. 

New Normal

Life has changed quite a bit at our household these days. I have begun working.

I am currently in the beginning stages of my internship at school. I am seeing clients a few days per week in the counseling center of the college I attend. I have had the privilege of walking with college students in the throws of reality. It has been a blessing to see these brave students wrestle with who they are apart from their family of origin, and the fear that comes with not knowing who they will become. I remember that season of life very well, and really didn't figure out the answers to many of those questions until recently. Change that...I am still learning.

This room is very similar to the room I meet clients in!! Very calming!

But, it has definitely changed the pace and routine of life around the house. I am not as emotionally capable as I was before. I am not as attentive and present as I have been in the past. Sometimes, my oldest has to come and push me when I am catatonic on the couch after a day of seeing clients in order for me to 'come to'. Okay, not exactly. But, there have been many conversations lately that go like this.

"HEY MOM!"

"Oh, hey, honey. I'm sorry. I'm a little out of it. How was your day?"

We are still trying to figure it all out. What is the balance? How do I self-care, yet be a mother?

As most therapists will tell you, we have a different type of exhaustion that sets in. No, I am not lifting a pile of bricks every day, or running around on the floor of the stock exchange, OR even saving lives in the back of an ambulance.  I am sitting. In a chair. All day. In a room. Alone with one other person.

But, the thing we have to do that is not required of many other jobs is that we have to sit and be perfectly present with another one's story. My ONLY job is to hold a sacred space for the other to come and sit in their pain. And, I cannot waiver from this in that hour. I cannot "check out" and look at my phone or get up and walk around. I am looking straight into their eyes and tracking every single word they say. And I am trying to honor their life story in (hopefully) a way that is healing.

Now don't get me wrong, I do love this work!! I am, quite honestly, so honored that someone would allow me to come alongside their journey. It is remarkable to see people be so brave as to look at their pain dead in the eye!

But, when it comes to the end of the day, I am, many times, flat as a pancake. Our professors have been harping on something called 'compassion fatigue'. And, they are correct! As therapists, we must be balanced in getting enough sleep, good nutrition, breaks, self-care, emotional support, etc, before we can help other people.

And so begins the evenings with my guys...

Bless the genius behind this place!!

They are having to get used to this new way of being. As their mother and only parent, they rely on me to meet their needs that are largely emotional at this stage in the game. (and physical, if you live with two boys, you understand the messes they leave behind!)

So, we have a lot of Trader Joe's frozen, heat-up-and-eat meals. Thank heavens for TJ's!!!!

As my sweet friend calls it, the "Working Mom's Grocery Store". I am really sorry for those of you reading this that do not have access to TJ's. God love them. They make wonderful prepared meals that ACTUALLY have somewhat natural ingredients, are priced reasonably, and taste delish!!!! And, if you have some "study" that says that TJ's actually has GMO produce or their freezer food is laced with carcinogens- please keep that information to yourself. Thanks.

So, many of you mama's reading this will say, "What else is new? I've been working since my baby was two days old!!"

And, you would be right to say that.

This is just new for us. I have been working different part-time jobs, music stuff, singing, and performing this whole time. But, the work has been sporadic, and I have had the blessing of being able to, for the most part, be at home when my kids got off the bus every day. I have not taken it for granted one second. Because, in this day in age, my story is the exception. Most families are two income families. And, it is unheard of that single mama's get to stay at home. I have scrapped and saved to make that work because I knew it was the best thing for MY family. Not anyone else's story. Only mine.

So, things are different. And change is always hard.

But, this is the part of the blog when I say, HOW DO YOU ALL DO IT???????

How do you single, working parents juggle it all????????

I realize this may be the scariest picture of all time!

Seriously, how do we all make it work? I think that being a working parent has gotten so normalized in our society that it is often seen as WEIRD if you don't work. I remember my son asking me one time why I wasn't employed full time. I had to work really hard not to forcefully grab his collar, pin him up against the wall and say, "I DO WORK FULL TIME!!! LOOK AT THE FOLDED LAUNDRY, EXCEL SPREADSHEET BUDGET, AND FROZEN DINNER BEING HEATED UP ON THE STOVE!!"

No, no, I didn't do that. I slapped him across the face and demanded that he go get a job in the coal mine because he wasn't 'pulling his weight around here'.

Okay, okay, I didn't do that either. I simply said, "You'll understand one day."


I guess what I really want to say is, I want those of you who are doing this alone to stop and think about all you juggle. It wasn't supposed to be like this. No, I am not suggesting that women shouldn't work and should stay in the kitchen. NOT EVEN A LITTLE BIT. It's just that it wasn't supposed to be this hard and complicated. In a perfect world, we would all have energy to love our kids, love our work, and have fulfilling lives in between!

It is hard stuff. And, don't let the culture tell you it's just what we do. Stop and take care of yourself. Feel your feelings and let yourself cry over the pain of not feeling like you're enough. Because you are not, and you weren't supposed to be. Let go of the expectation of being together and perfect! We are all so hard on ourselves and harbor such self-hatred over the comparisons we make to other people.

Say it with me:

It is okay if my child plays on the iPad for an inordinate amount of time.

It is okay that we are eating something out of a box.

It is okay to say this is hard.

As my spiritual director, Gail, says almost every time I see her, "Be gentle with yourself."

Even though you are fighting a big battle, put your weapons down for a bit, and let this tired warrior catch a breath. For when you do this, you are giving yourself a little more to give with each breath.

This is very counter to our culture of "Go big or go home" in America.

We aren't built to do it all.

But, once you give yourself that nod of acceptance, a crazy thing happens. You find you do have a little gas in the tank left to give to someone else. You can play that silly game with your kids, or have a serious heart to heart about girls, or go throw a football.

And, when they have their own kids, they just might get it. Maybe.

One can only hope.

The Dreaded Transition

I very much apologize for such a long hiatus from this blog! Summer time has, unfortunately, not given me long periods of down time. In addition to being the only parent, I am currently in school right now finishing a master's degree in Marriage and Family Therapy. I figure since I have been through, what feels like, about four lifetimes, maybe I can help someone else. I have another year and a half before I walk down the aisle with cap and gown. All told it will be about 3 1/2 years of extra schooling. So, you can imagine my disdain when I see claims of getting a "few weekends course" on becoming a therapist! There is a method to the madness, and I look forward to the day I can hang a shingle and begin seeing clients. 

I may even see myself helping families with a new autism diagnosis. Those first couple of years after the initial "drop" into autism is a daunting one at best. You are, on the one hand, relieved that there is a name for all of the craziness that you have felt, and on the other hand, you are completely overwhelmed and thrown into an unknown world of doctor and therapy appointments, school meetings, diet changes, medications, THE WORKS! 


A dear friend from childhood just sent me a message through Facebook to tell me that she believed that her son was on the spectrum. She gave me the list of 'symptoms' and all I could do was shake my head and say to myself, "yes, I believe she is right." My stomach dropped as I read her plea. I remember those first years and how freaking hard everything was. Nothing made sense. I was exhausted and depleted at every turn. Mind you, I am still tired, but life has a different pace to it. My hyper-vigilance is not quite what it used to be. But, I have a real empathy for those just now finding out. 

This same friend asked me to write about transitions. Aren't these the hardest??  I can't say that transitions are not still the number one thing that sends Liam through the roof. 

Here are a few tips I have learned (the hard way):

1. Keep a schedule
This may come very natural to some of you. I, however, prefer to float aimlessly through my day. I love to see what adventures may arise out of the blue. I love to slowly waltz from one activity to the next. This. Does. Not. Work. With. Autism. I repeat, you may not be a creative-type without a plan. Free-form does not exist in the world of autism. I have learned that there is at least 85% less whining and freak outs when there is a visual schedule. What is a visual schedule, you might say? (Oooohhhhoooohhhhhooooo, your world is about to change!!!!)

PECS stands for Pictorial Exchange Communications System (now you're smart!)

When Liam's therapists began giving me all of these pictures of things that he liked or things that he did during the day, I just sort of stared at these them like, "um, yea, how is this supposed to help me not kill my child?" They just looked at me and winked, and seemed to say, "just give it time, you'll be using these like crack- and, oh, we know what we're doing and you don't." Turns out, they were right. Even a toddler at 2 years of age can see what the pictures represent. For whatever reason, this satisfies the autistic child's need for order and predictability. And, now that Liam is older, I can just write out his schedule without using the pictures. I even schedule his down time (shoot me!) like: 

1. Eat breakfast

2. Watch tv

3. Play basketball

4. Snack

5. Computer time

6. Massage mommy's shoulders 

Do not do what I did which was to ignore the PECS for several years. Go ahead and start using it today!! 

2. The Great "If-Then" strategy:

Let's just get this right out of the way. You will be doing an inordinate amount of bribing with your newly diagnosed child with autism. You will say, in the beginning, that you will not partake of such parenting shenanigans, but, alas, my friends, you will.  The "If-Then" board gives you a nicer name for your shenanigans than that nasty "B" word.  

This is self explanatory, but you simply have a laminated sheet of paper that has an IF column and a THEN column. I used to have this paper with pieces of velcro so that I could put the visual symbol I wanted to under each one. (I can't seem to find a good example of one online)

For example: 

IF:                                                   THEN:

CLEAN TOYS                                EAT COOKIES

When you are yelling maniacally at your child trying to reason with them as to why they should obey you, they do not get what you are saying. Stop talking, and start pointing at the chart. Remember the KISS method which is "Keep It Simple, Stupid". Anything more than the 'IF, THEN' turns to white noise! 

3. Give them a LONG RUNWAY:

Much like an airplane that needs a really long runway to take off, a child with an airbus size tantrum ability needs a long runway to prepare for these transitions. You cannot expect a child sitting with the iPad on the couch to gently move to the carseat in 5 seconds time. You could with your other child. You CANNOT with this one!! When you foresee a transition coming up, you need to begin the countdown at LEAST ten minutes ahead of time, if not more. I even would do transitions for the end of a favorite book! (Okay, we are two pages away from being finished, then bed time...don't hit me.)

4. Try to do all of this without emotion

Now, I realize that even while I am typing this, I am clenching my jaws and yelling at my children to go to bed. There is hardly a good way to not show your annoyance when your child is screaming bloody murder and hurling themselves on the floor. But, I can attest that much of my son's tantrums and antics were to push my buttons. Yes, he has sensory and transition issues, but there is nothing quite as good as getting your mama's goat! Also, these guys need to be given credit where credit is due. They know that screaming gets the job done!! Everyone hops to it when Johnny Junior is having a meltdown. So, the key is to remain calm, grab your "IF-THEN" board and continue to point to the board until they respond appropriately. It may take you 20 times in a row. It may take you twice. But, once you have remained the calm one, you are actually modeling for them what normal behavior is. When you are not responding with chaos and emotion, the fun gets taken out of all the bad behaviors. 

5. Pray

6. Drink a glass of wine. (or three)

7. Share your journey with others

Unfortunately, most people will not get it. But, it won't hurt to try. You cannot shoulder this alone. You need friends, family, therapists, pastors, and anyone else who can be there for you in a significant way to help. Do not be afraid to ask for help. There will come a day when you won't need as much. There is an end in sight. But, until that day, you have to invest in relationships that give back.

And, once you have done all seven of these steps, you will go to bed. Sleep as much as you can, and do it all over again the next day. 

Power on! You are stronger than you think.

Surrey Dune

Today, I am happy to say that I am down at the beach. My family and I come down to the Gulf of Mexico a few times a year. I am not unaware of this luxury. I realize there are some who may never get to spend a week off at the beach, or even get a vacation. Or as we say in the autism community, "same problems, different location".

This family beach house is named Surrey Dune. For one reason, it was named after my grandfather's family farm outside of Anniston, Alabama called Surrey Hill. And the dune part comes from the fact that it is quite literally sitting on top of a dune. The views are gorgeous, and I have watched the landscape develop all around us since 1984 when we began coming down here. This house has watched as scenic 30-A has become the vacation destination of the entire southeastern region of the country. Seaside was built close to the time when my grandparents obtained Surrey Dune, and it has been steadily growing ever since. 

As a child, I was not satisfied with our beach front haven. I wanted to be where all my cool friends were- at the Sandestin Hilton. But, it was just a far enough drive from my beach that my parents would never take me. I dreaded going back to school after spring break to hear all stories that I missed. I pretended that long, solo walks on the beach and playing UNO with my parents was just as fun. Little did I know that I would crave that time as an adult. But, what did I know as a kid? You can never tell kids that in the moment and have them get it! (stupid kids!)

Note the high cut hips!

Some things about this area haven't changed a bit. Alvin's Island, a store with an identity crisis, is still going strong. Alvin's Island was a store that everyone in the 80's thought was the coolest place in the world. I can remember asking my mom to take me there to get an awesome one-piece suit. I was not allowed to wear two piece suits, so the concession was to allow me to pick one out from Alvin's Island. My swimsuit was pastel pink and white pinstripes with cute snaps going down the front. It also was high cut on the hips! This was going to be a big hit with the fellas when I was in 8th grade. (think Tiffani Amber Thiessen circa 1989 "Saved By the Bell"--SO HOT!!)  The outside of the store looked and still looks like a fake rock or island- like something out of Disney World that was so cool when the park opened, but less appealing next to the more glitzy rides like Space Mountain, the Tower of Terror, or the Dumbo Ride. It has palm trees and the logo is written in 80's skater font, or in some locations, like the logo from Gilligan's Island.  The sign usually reads ALVIN'S ISLAND (WHERE YOU TOO CAN LOOK LIKE TIFFANI AMBER THIESSEN, OR GET A HENNA TATOO, OR PICK UP A PUKA SHELL NECKLACE) 

Not sure when the live shark and gator happen. This adds a whole, new dimension.

Alvin's Island is located about 20 minutes east of where we are in Florida in a little town called Panama City Beach. Unfortunately, PCB (aren't there carcinogens named after this place) has seen better days. Panama City Beach is like the beautiful prom date from the 80's. Her hair was perfectly teased, her puffy sleeves were sexy, and no tan was tan enough! Now to look at her, the 'sun-in' has faded, her tan skin is sagging in all the wrong places, and the only places that are puffy are the bags under her eyes. 

But maybe PCB will make a come back! Maybe, like Aztec print leggings, PCB will rise up and be the kitschy place we love and adore. Where else can you pick up a 6 pack, flip-flops, and an air-brushed t-shirt that says "Love Bites"?

In keeping with the kitschy theme, Surrey Dune is quite the specimen of kitsch. My lovely grandmother has collected all things beach and crammed them in to make it a wonderland of dolphins, shells, flamingos, and crabs...and that's just the den!! In her generation, you would never put your nice things in your vacation home. You put the stuff you don't want and add whatever appropriate themed knick-knacks. If you have a lake house, you add bass master paraphernalia and signs that say "gon' fishin'". In a beach house, you add signs like "Two Olde Crabs Live Here" next to a vase full of airbrushed seashells.

Or you have things like this:

These two items are NOT for sale, so do not inquire about them!!
















The best part of Surrey Dune is how my family is a firm believer in "if it ain't broke, DO NOT fix it...you add the new parts and keep the old."  As demonstrated in this lovely outdoor shower head. 

Do not, I repeat, DO NOT replace any part that works. This rusted out water pipe only looks like it doesn't work. We will, however, replace it with a killer shower head. (the bar of soap is original to the house)

Anytime there was something broken or finicky, my grandmother would add a word of warning to ward off those who may want to break her rules when she is not around. One of my favorites was the disposal that had a sign that read:

THE DISPOSAL IS OLD AND CRANKY LIKE ME!! DO NOT PUT LARGE FOOD INSIDE!

I do love this place. With all of it's clanky, quirky-ness, it is a wonderful place to grow up. My kids, of course, take for granted that you merely have to open the sliding glass door, and you are on your way to the beach. There are no high rises to ramble through, or resort fees to pay. We are directly in front of the gulf with the most magnificent views and sunsets! We will gladly put up with the scratchy poly-blend bed coverlets and water-stained ceilings. This is our beach house. This is Surrey Dune.

View from our front porch!

***Surrey Dune photo credit: David Gunnells***

Wheel of Fortune

Eek! I just realized it's been a month since I last posted. Life has been busy in my household. I am not complaining though! I have been able to go out of town on not one, but two fun trips in the month of April. 

One of those trips was to Las Vegas. What a treasure trove of sensory overload that place is!! I thought of Liam several times as I went to the larger than life, four-story M&M's super store, saw the statue of Liberty made entirely of Jelly Belly's, and played the Wheel of Fortune slot machine. It truly is the Disney World for adults. I imagined what it would be like for him to walk in to a casino. I then imagined his head exploding.

JELLY BELLY GET IN MY BELLY!!

I brought home pictures of Vegas for him to see. I even posted a video of me hitting the button on the Wheel of Fortune slot machine. He was riveted! 

"When can I go, Mom?"

My mind traced back to the Pussycat Dolls dancing (if that's what you call it) in the middle of Caesar's Palace.

"Probably not for a REALLY long time, Liam."

You also have to have ALOT of money to make Vegas work for you. And, with my son's OCD capabilities, I will probably need to steer him clear of Vegas for a while.

Even as a well-informed, somewhat level-headed adult, I can see how gambling addictions happen. The "I'll-just-do-this-one-more-time" logic kicks in really fast. You see the breakdown happen when you notice someone two slot machines down from you win $100. You automatically assume that your big break is ONE pull away. You imagine what you will do with your winnings, the places you will go, maybe get that luxury SUV you've always wanted. Who cares? It's free money!! They're just GIVING AWAY MONEY AT THE CASINO.

All of these flowers are real. Pictures do not do the Bellagio justice!

And then you wake up. You realize you've been pressing the same button 20o times and you have like 3 pulls left and $0.75 credit. You IMMEDIATELY cash out. I mean, you know when to stop! 

As my mama said, "Rebecca, the house always wins!"

I did enjoy myself though. I was with a group of fun girls who make me laugh harder than anything. We saw two great Vegas-y shows- Shania Twain and David Copperfield, ate amazing food, and were awestruck at the beauty and architecture of the hotels. (I mean, hello Bellagio!!!)

My favorite slot was by far the Wheel of Fortune machine. That machine ignited all of my pleasure centers in the brain at once because of the sounds that are JUST like the TV show, and the bonus spins they would throw your way at just the perfect time. (most likely when you were just about to cash out)

I have a deep affection for Wheel of Fortune. I grew up as a child of the 80's watching Vanna spin that wheel night after night. I have a dream of going on that show. I even went to a cattle call in Tennessee they held in order to be a contestant on Wheel of Fortune. As fortune (or misfortune) would have it, I did NOT get my name drawn that day. So, I now sit along with everyone else and solve many of the puzzles before the contestants get to them. 

I have passed this love for Wheel of Fortune down to my son with autism. It is the perfect 'Aspy' (that's short for Asperger's) game with a spinning wheel, puzzles, and the same routine every show. Liam does get frustrated when I solve the puzzles before him, but he likes watching it with me all the same. Pat Sajak and Vanna White were at the top of his celebrity list for quite some time. He would wake up and announce when it was their birthdays. To this day, he knows exactly how old Vanna is. (I'm sure she has tried to keep that info off of the internet, but even so, Liam will NEVER forget!!!)

So, when February 18th rolls around...guess who is up at the crack of dawn eager to announce Vanna's birthday!!!!

For some time, Liam would obsessively search for Youtube videos of Wheel of Fortune's past. Such as, do you remember the show from October 1993? Well, Liam does because has seen it 50 times. And, he can tell you the puzzles that were solved on that show. 

This machine was not a winner. :(

He also figured out quickly that if he had his hand on the master rewind/fast forward button that he could fast forward to the end to see what the puzzle was, and then rewind again and "solve" it before the contestants. Liam has no problem using a little trickery if it means in the end he is the winner. Too bad life does not come with fast forward and rewind. We are still working on that little concept. 

And, sometimes I think how could I make this incredible brain of his work to my advantage?? How can I use that seemingly endless memory of his? There's got to be a way! There's got to be a cash cow in there somewhere!!!!

Hmmm...

Maybe that Vegas trip is not too far off after all!! 

Bewitched!

I am waiting with bated breath for the school bus to show up. It's almost that time and I can feel the hairs on the back of my neck stand on end, my shoulders are tightening up, and my jaw is curiously tense. 

All children around the world become bewitched around 5pm.

Chill out, you might say!! What's the worst thing that can happen???

This is the time when the bewitching hour(s) begin. 

We all know what this is. 

Bewitched. When I look up the definition it mentions something about being enchanted and delighted. I'm not sure what Webster was smoking when he came up with that. Because at my house, the bewitching hours are from after school/homework hours to bedtime. And to me, this is really just the in-between time before I get my kids in the bed. Can I get an AMEN!

As you know, I love my children. They both enchant and delight me, at times. But, something about the day getting darker, the dreaded "what will we ever cook for dinner", and the mood-altering homework hour is just about enough to send ole Mama over the edge. I mean, why can't the teachers do his homework with him at school?? I mean, what am i paying for???? Oh...wait...public education.

I do have a bit of a right to be tense. Last week was a doozy. 

Wednesday morning started like it normally does: me shuffling out of bed at the crack of dawn, scowl on my face because the sun was peaking in, and Liam being as loud as he possibly could be. 

He amazes me. I have never seen anyone dash out of bed like he does. He operates in 'off' and 'on' mode. No slow fade in. And this morning was no exception.

But something has been happening lately. He has grown a bit surly the past few months. I can only describe it as edgy and disgruntled. I know! You're thinking, uh, what else is new? He has autism. No, this is different. He has taken his complaining and whining to an entirely new level of awesome-ness. I think it is something called hormones. They are beginning to surge through his veins with the force of a tidal wave.

So, there he was, yelling at the "stupid cereal box" because the cereal clearly poured itself way too much in the bowl. (How dare that cereal! Maybe it IS stupid!!!)

And, let's just say I was not on my game this morning. I was grumpy and tired and was in no mood to hear all this clatter over nothing this early in the a.m.

So, I began yelling, complaining and whining (because that's productive!). After this tactic did not exactly get us anywhere, I sent him to time out. I was thinking what a genius I was because I thought I had won this little skirmish. 

Nope. He just began hurling the whining and complaining from the chair. 

I quickly walked over to him with wagging finger saying something about being the one in charge when he decided to throw his entire FULL bowl of cereal and milk at my face. 

It was exactly like the movies. Slow-mo, with a huge thud against my jawbone and streaming milk and shredded wheat all over myself, the furniture, the floor, the walls, the chairs, the rug-everything EXCEPT Liam!

I wish our spill site was THIS clean!!

The look on his face was horror mixed with, "oh my God, what is she going to do to me!!!"

This is one of those moments when the parenting book goes out the window. The response that you want to have and the response that you need to have are two very different things. And the chasm between the two is long and wide!

I will let your imagination fill in the blanks on what I wanted to do...

But, I knew that I was going to have to de-escalate the situation, and fast! I was the adult. Not him. 

I threw my disgusting cereal-soaked clothes to the floor and showered off my hair as best as I could. I took a few deep, VERY cleansing breaths and headed in to face my opponent. I very calmly told him that he would have no more free time today and he would spend the rest of the morning cleaning up the mess he made and writing sentences until the bus came. 

Some of you may be thinking that the punishment was not enough. But, I have learned that I have to parent Liam a lot differently than my other child. Consequences have to be immediate, and the worst thing in the world to him these days is to not have free time. 

Anytime he tried to blame me for his throwing the bowl of cereal, I quickly interrupted him, and told him he was not allowed to speak unless it was directly related to cleaning up the mess he made. He mopped, and wiped, and swept. It took forever and I had to sit there and manage every second of the clean up. 

I tried not to let him see my tears, but when he did, he asked me why I was crying. I didn't know whether to maniacally laugh in his face or weep uncontrollably. I just simply said, "You know why."

The bus arrived and he set the mop and dish rags aside, gathered his books, and walked out the door like it was a normal day. 

"Bye, mom!"

I was incredulous. Even after all this time, I still can't believe he doesn't get it. I want him to SEE ME! I want him to see what he does TO ME. But, he doesn't. It doesn't register. 

I sat down and wrote an email to his team at school just to let them know the happenings of the morning. I asked his 5th grade teacher, who happens to be a male and an ex-cop, if he wouldn't mind giving Liam a little man-to-man talk about violence towards women- especially the mothering kind. He graciously agreed.

(Now this is the part of the story that reminds me to tell you parents of autism that you need a team around you.)

A few hours later I received an email back from his special ed teacher saying that he seemed upset this morning when he arrived at school. She sat him down and he told her he was "very sad." Knowing what had happened, she probed a bit further and asked if he wanted to talk about the incident. He did, and said that his male teacher, Mr. Carnes' said that "men who hit women go to jail", and that their sentence would be, "two days."

I smiled when I read that. Of course! Now, THAT was the thing that stuck out in his mind. But, I didn't care. Whatever it took was fine by me.

Mr. Carnes wrote me an email stating that they had a good talk, and that I should look for a letter from Liam when he got home. 

Once home, Liam proudly waved the white envelope and announced that he had a letter for me. 

"I'm sorry, Mama."

"Thank you, Liam. What does the note say?"

"MOM, just read it, OKAYYYY." 

**sigh**

"Dear Mom I am sorry that I threw a bowl of cereal at you and I really love you so much. Because you are my mother. The things I was sorry about was hurting you, yelling at you and being mean to you. I love you and I will never do that again. The things that you do is making me my dinner, you love on me and you snuggle with me. And you buy me surprises, you ride bikes with me. Love, Liam"

**smile**

I'm glad he stuck the part in there about buying him surprises. He's already a using a little Freudian technique. 

The Letter.

I am so grateful for a team of people that rallied around us and walked Liam through something that didn't even happen at school. They jumped in, feet first, and took the opportunity to show him what it means to be empathetic and caring.

And, I am grateful for the corner of Liam's heart that this letter was written from. I know he cares. He has to. He just doesn't always know how to show it. But, I have the proof. It's written on a white 8x11 sheet of paper. 

Even if it was scripted a little bit, those are his words. And, I'll keep riding bikes, I'll keep loving and snuggling, and making his dinners, as long as he lets me. After all, it's these little moments that make it all worth it. 


Well, sort of....