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.

Homework Helper

I thought this day was going to be such a good day! So far, all had gone the way I wanted it to- laundry was up to date, my paper for school was moving along nicely, and I even got to share a cup of coffee with my bestie at her house this particular afternoon.

All illusions of perfection were dashed when I saw the babysitter calling...

Uh-oh. 

There are two phone numbers I do not like to see come up on caller id- babysitters and the school. Nine times out of ten, these calls are not going to be good. 

I love all of my sitters! I have been blessed to have great girls that love Liam and are super understanding of his diagnosis- even when he is less than stellar or moody blues! This particular sitter has been a Godsend. She is one of those that just picks up on things that need to be done around the house. She doesn't use the down time as a time to get caught up on Facebook (because that's what I totally would've done if I was a babysitter nowadays). She texts me to ask me if I want my whites washed or if she can get dinner started. Brings a tear to the ole eye!! 

But, this was not a good call. As soon as I picked up the phone, I could hear her trying to hold back tears. (not a good sign)

"Are you coming home soon?"

"Yes, but I'm still another 20 minutes away! What happened? What did he do?" 

It turns out Liam got violent this day, something that he hadn't done in a while. 

Having a tutor helps me.

My sitter comes a few times per week to do homework with Liam. If she did not do this, someone would be hurt in my house- me or my children. Not sure which. Homework is NOT my strong suit. Which is why the Bota Box wine is nicknamed the "Homework Helper". Sadly, I have to get my high school freshman to work out math problems with my 5th grader because...well, the problems are too hard for me. Needless to say, my sitter is an integral part of my week. WE ALL NOTICE WHEN SHE IS NOT AROUND!

It seems my sitter asked Liam to recite his vocabulary words one too many times and he decided he needed to give her a swift kick to prove his point. I do not make light of this because I have been on the receiving end of this kick and it is painful. And, even more than pain, it is traumatic. 

The trauma of having a child tantrum and assault you is tough. You cannot know this until it happens to you. And, when it does, it catches you off guard, and you feel exposed and vulnerable. 

I have had to restrain him before because he was violently throwing things and was going to hurt himself and/or others. It has gotten so much better over the past few years. If it had not, I don't think I would have the emotional energy to even write this blog. 

Thankfully, my sitter handled it the best way she knew how. I told her to go ahead and leave my 14 year old in charge until I could get there in a few minutes. 

So, what do YOU do in times like these? 

I choose to turn the tv on and check out.... 

***sigh***

No, that's what I wish I could do in these moments. 

These are tough times. You are mortified as a parent that your child is capable of hurting another human being. You are stressed for the sitter and wondering if they know what to do. You are sad because you thought you had dealt with this before- you thought this part was over. Or, at least, that's what you wanted.

Thankfully, I have an older child that can take over, if need be. In this instance, it was best that my sitter get out of the line of fire, assess for safety issues, and get out of dodge! 

But, not every one has an older child capable of stepping in. And, not all autistic families have good help available to them. 

In the past, I have placed ads on the online bulletin boards of colleges to get help for Liam. I am a single parent, so having reliable, competent help is paramount in my life. But, looking for someone who has had experience with autism is really helpful- especially if that person will be a significant part in your child's week. 

There is nothing more traumatic than an autistic outburst!

Having a behavior therapist on call is also helpful. My girl, Hunter, has been my go-to person when I have had to go out of town for any amount of time. I have her phone number plastered on the fridge in case the family member or sitter that is keeping Liam has any issues. Hunter is kind enough to do that. Not everyone would be so generous with their cell phone. But, she is committed to seeing her families through some of the most difficult times in their lives. 

Also, having a 'safety' plan in place is key for those times when things are not going so swift. 

Admittedly, I am not the best at warning my sitters of worst-case scenario. Who wants to tell their fresh-faced college student that they should wear a helmet in case a blunt object could potentially come flying in their face?? I like to do the slow fade approach. Win them over with Liam's precious smile and antics, and then cross my fingers nothing bad happens or sets him off. **sheepishly** "tee hee!"

And, honestly, his behavior has gotten increasingly better with age and maturity. So, many times, I simply forget.

 [But, one could ask themselves if it is my unconscious (Freudian) "forgetting", and really I am just hoping someone stays on to help me with my kid. Not sure. I'll tackle that in my next therapy session.]

Safety plans really could be as simple as locking the child in a room that is child-proof, calling for help, and sitting outside of that room until help arrives. Another idea is putting the rest of the family in the car and locking it while the parent or person in charge goes to deal with the child. 

Getting the child to a safe place and calmed down is really the first order of business. We have worked so tirelessly on getting Liam to self soothe that the strategies are finally paying off. In this instance this week, he put himself in his room (albeit while slamming the door) and got himself out of the hostility. It takes training and a lot of patience and consistency to get these kids there, but it can be done. DON'T GIVE UP!

When I finally got home, I was calm and collected (after turning on rock music extremely loud and banging the drums on my steering wheel for the remaining 15 minute drive) because the last thing you want to do is seem flustered with your child. They smell weakness and they have 'won' when you show signs of being upset. (This is very hard to do- I have TMJ problems from clenching my jaws.) I gave him his sentence- he was going straight to bed (at 6:45pm) and no technology for the next two days. 

I did not get the empathetic apology I was hoping for. It was forced and he was still trying to justify his actions with, "well, she was making me do homework too long." I still made him write the apology note. As an older friend said to me one time, "You teach your kids to say please, thank you, and I am sorry. Eventually, it will catch up with their hearts."

Yesterday, he got off the bus as usual.

"Liam, I made you your favorite snack."

"Thank you, mom!!!"

This thank you came out on his own. I didn't even have to ask for it.

Baby steps.

War Time Battle or Just Dinner?

I want to start this blog post and talk about a little word called guilt. This tiny 5 letter word has brought all kinds of havoc into our lives, hasn't it? Guilt has the power to bring us to our knees. It brings with it all sorts of anxiety and pain. And, I see a lot of that going around in the world of parenting these days. And, for certain, it is in the hearts and minds of countless parents of children with autism. But, is all that guilt necessary? There is a weird pressure that we all feel. Are we doing enough? Should I medicate my child or is that just being selfish because I want him medicated? Do I do the treatments and diets that little Johnny's parents are doing or do I spend that money on a vacation for our family (or better yet, myself)? Is it normal that I don't like my child sometimes? Did I even feed him dinner tonight?

WHAT?! Don't tell me you've never been blissfully sipping your hot tea before bed and breathed a sigh of relief that your child is finally (somewhat) asleep, and thought, "holy schnike's, I freaking starved my kid tonight and TOTALLY FORGOT!" The secret Greater Judging Mom's Association (we'll call them GJMA) would NOT approve! Or, better yet, did your child scarf down an entire bowl of buttered popcorn, and you rationalize that maybe there is one part dairy (butter) and one part vegetable (corn), and that should suffice as a balanced dinner...we'll start the healthy plan tomorrow.

Guys, it's been 11 years for me. Eleven years of me saying, I'll start that tomorrow. And, the guilt, oh the agonizing guilt!! But, the battle scars from dinner time are deep. It takes a massive emotional wind up for me just to THINK through dinner time, much less follow through with it. I can remember my son being a toddler and putting two measly, eensy, weensy green beans on his plate. I was so proud of myself- "this will teach him to love and tolerate food with color on his plate", I thought. With a slight cross over of my feet, a confident twirl around, a smug smile of victory on my face, the two green beans grazed my ears as they were being hurled at me- one at my right ear and one at my left- like slimy  pieces of shrapnel from a battle of many more like these to come. Or, better yet, the disgusting gagging, coughing, wailing and gnashing of teeth that occurs when I put a piece of...wait for it...strawberry on his plate. Yep, strawberry. Isn't like every other piece of candy in the world made with strawberry flavor? And this is just in one 10 to 15 minute period of however many are in a day.

Which brings me back to guilt. We need to start letting go of this. Life with autism is difficult. It is not as it was meant to be. The bonding that naturally occurs between parent and child is not there. You are pushed away emotionally by a child that demands constant attention all day long. When the voices of guilt, shame, and doubt creep in, remember you are doing the best that you can do with what you have TODAY. Or, maybe better still, THIS MOMENT. Because, this moment is all we have anyway.

Now, I want you to wrap your left arm around your right, your right around your left, (look around to make sure no one is staring), deep squeeze, and say to yourself, "I am a good parent. I'm doing the best I can right now...NOW GO GET 'EM, TIGER!" The tiger comment is necessary to counterbalance the goofiness of self-hugging.

For real though, you're a super hero. Put your warrior gear on, and know we're all in the trenches together.