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.

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.