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.

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.

'Tis the Season to Share the Diagnosis

So...Liam got sent to the principal's office yesterday.

It seems that one sweet little girl got her name called during the announcements for winning a character award that Liam did not win. This was, apparently, unacceptable in his mind, so she deserved to have a few school supplies missing from her cubby when she got back from snack time.

Poor guy. In Liam's eyes, life is just not very fair. He doesn't understand why sometimes his name is called to win a character award (Perseverance three years in a row-can't say he doesn't deserve THAT one!), and why sometimes other people's names are called.

I've tried to explain sometimes you win, sometimes you lose. I think I've even sung Kenny Rogers "The Gambler", but nothing seems to make sense to him. And, if I stop to think about it, to explain this concept is pretty difficult. It is very abstract- something that Liam cannot categorize in his mind full of folders and filing systems.

What he understands are things that are never-changing and constant. Like concepts of math and grammar, and the news anchor, Holly Thompson, at 7:27am on Channel 4 news. And, like whenever he says, "But, mom, I don't want to do that," I always reply with, "Too bad." (Sometimes when I don't say, 'too bad', he asks me to say it just so all is right with his universe--- I wish I was kidding.)

This poor little girl probably got really upset by the fact that Liam stole her goods. But, I know she understands the big picture.

I know this because every year I go into Liam's classroom and give a little presentation about autism. I tell the class a bit about how the brain works and how Liam's brain works differently than theirs. Many times they will ask questions about Liam and his behaviors. We usually do it when Liam is pulled out of the classroom for reading, so his classmates feel the freedom to ask the sometimes tough questions.

Some of you may question my reasons for doing this. Don't you want him just to blend in with his peers? Don't you want him to feel as 'normal' as possible?

Cerebral scan of autistic brain.

The answer to these questions is yes. Of course. I want Liam to feel welcomed, loved, and admired by his peers. And, that is why I choose to do it this way.

I have found that the more information people have, the more equipped they are to have empathy and understanding for the situation. I can see the lightbulbs go off in these children's minds when they start to understand what Liam is going through.

The fact is that Liam is not 'normal'. He doesn't behave in appropriate ways a lot of the time. He's getting better, but it's not missed on the other children that he is sometimes talking to himself or laughing out loud when he shouldn't be. But, the other tricky part is that Liam also doesn't 'look' the part of an autistic or special needs child. He does blend in at first with his peers, and if you are not looking for symptoms, you might not notice.

But, that can become problematic when he does break a school rule and gets a consequence that may look different than what the other kids get. If he throws a book across the room, he might be asked to simply take a break. If these kids did not know his condition, they might begin to hold him in contempt. "Why does he get special treatment?" "If I did that, I would lose all of my recess.""Hey! That was a perfectly good book!"

I did this when we played baseball (or attempted to play). I sent an email out at the beginning of the season explaining Liam's condition and that I would appreciate their patience. I was amazed at the compassion that the parent's had on Liam, and even that they would explain things to their own children about learning to cooperate and being patient with others that are different.

Being open and honest has worked for us. I know there are some families who choose not to be open about their child's diagnosis, and that is okay too. But, it seems that when I am comfortable with my son and autism, everyone else seems to relax too.

And, hopefully, these trips to the principal's office will be fewer and farther between. Mr. Parman, our school's principal, is a kind and patient man and has watched our little Liam grow up leaps and bounds over the years. He admitted the other day that he will be really sad when Liam and his ever-present light leaves his elementary school next year.

Liam with two of his buddies. So sweet!!

And, I may be packing up my art and presentation supplies with Liam headed to middle school (yikes!) next fall. I haven't decided yet. We will have to see if the need for information and the uncool mom will outweigh the need for space and independence.

If the latter happens, that's one opportunity that being uncool will be just fine with me.