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.

Bringing Back "The Worm"

I was thinking today about all the various people that have helped me throughout my journey through autism. Some would say it takes a village. In my case, I believe it takes an entire continent. I do not know where my life would be if it were not for the various people who have helped me along the way-whether I paid them to be there, or held them for ransom until they did help me-either way, I am forever grateful.

One person that rises to the top in my mind is one, Hunter Gast. I have not even asked her if I can publicly ode her, but...well,... too late! Hunter came to me when I received a recommendation for HOPE Autism and Behavioral Health Services in Franklin, Tennessee. She was a new behavior therapist there, and she came over for a consultation. She came at one of my most desperate points. I think just that morning I had witnessed, what we affectionately named "The Worm", which was the sort of tantrum that Liam would throw that was so strong his body would contort into the popular 80's dance. Most of the time I did not know whether to laugh or cry. Sometimes, if the day had been really bad, I would just sit on the floor next to him and cry myself. I would have no where else to go with my frustration but on the floor. So, I would do "the worm" too. 

So there I was, tear-stained face, looking at this young twenty-something to save me from my situation. In my head I thought, "what does this cute Vandy grad know about my kid?" But as the weeks went by, Hunter thoughtfully, and sometimes bluntly, whipped us into shape. She saw the many patterns that Liam and I were in. The other dances we did together. Unlike "the worm" which is pretty much done by yourself, we were moving in unhealthy patterns of dance with me being worn down, giving into his desires, and him not learning how to overcome the idiosyncrasies of his autism. Liam and I knew our steps well and we needed a professional to get us out of them. 

I think the day that sealed the deal with Hunter and her commitment to us was when she received a swift kick in the face from Liam when she was (how dare she!) trying to get him to put his shoes on. She later called me that day (like a certified gangsta) to report that she indeed had a hairline fracture to her nose. I think that I would have politely turned in my resignation at that point, but this made Hunter's resolve even stronger to see Liam become all she knew he could be. 

(Liam looks like he's ready to do "the Worm" in this picture)

Do you have a Hunter in your life? I hope you do. We need all the support and resources we can get. And, the good news is that with all the publicity on autism lately, there are more and more people out there willing and trained to help. I highly recommend ABA therapy, which is what Hunter is certified in. It is the single most effective treatment that has gotten me through some of my worst seasons. So, if you find your little one doing "the worm", the "challenging cha-cha", or the "terrifying two-step", call in for back up! Get yourself another dance partner!