Our journey in the Autism Spectrum

Archive for the ‘ABA’ Category

ABA~yes, it’s about parenting positively

ABA and positive parenting

It was when Henry was 4 years old that we got the medical diagnosis of autism. It wasn’t so much a shock as it was an overwhelming wave. We began O.T., integration therapy and speech therapy almost immediately and we started looking at his preschool to screen for an educational diagnosis. I tried to read as much as I could about autism therapies, attended conferences and workshops. There are a lot of “therapies” out there. I knew that beginning a therapy program earlier rather than later was important. I also knew in my gut that whatever route we chose it would be essential that it fit with Henry’s personality and learning style. Also, realistically, it was going to have to fit in with our families lifestyle and personalities as well. If we couldn’t have the consistency at home as in a therapy setting, over the long haul, and as we all know, this haul is LONG, what good would it do? A few seemed they could be quite helpful. Many had that “too good to be true” feeling about them. And still others had “sham” written all over it. In the small print, between the lines…in invisible ink. I was trying my best to educate myself so that we could make an informed, intelligent decision on what might best help Henry. It was terrifying.

Our pediatrician, who diagnosed Henry, encouraged us to call a local autism non-profit organization for help with programs, additional resources, therapies, etc. (And, yes, it was our general pediatrician that worked with us. We do not have a neurologist, or a behavioral pediatrician, or a psychologist. We just have our amazing general pediatrician and for that we will be forever grateful to him!) It took me a year to make the call but finally, this is how we found the ABA program that changed our lives!

Yes, applied behavior analysis (ABA). It POSITIVELY changed our lives.

Applied behavior analysis is defined as “the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior.”

What I loved about our experience with ABA was that it “merged group instruction with guided observation, one-on-one sessions with the client and coaching of the parent or other caregiver.  Parent training was not just about teaching skills to the child, but teaching us parent how to best understand the child and the nature of their disability.” (learn more about Easter Seals Midwest and their programs here. ) I got to practice what we were learning right along with my son. Together! For two weeks my husband and I were coached, supported, and encouraged by our certified trainers. It truly was a mindfulness-based parenting approach in an ADAPT (Active Discovery and Participation through Technology) type model.

I learned to really see my son and learned how he processed things. Our communication was immediately improved. This program taught us HOW best to communicate with Henry and in turn, he learned how to communicate with us! Easter Seals Midwest’s program most certainly went beyond discrete trial teaching! (learn more about ABA and discrete trial teaching here.) Once we were able to communicate, Henry’s world began to open up to us and our world opened to him! It was, and still is, hard work. It takes continual practice but with this we’ve been able to slowly generalize these skills into everyday settings.

We are almost 5 years out from our initial 2-week parent training. Henry has been in mainstream school since Kindergarten and is going into 4th grade in the fall. Henry has autism. He will always have autism. That’s a part of who he is and we never want to change him into someone he is not. What we want for him is to be the very best Henry he can be. As he grows up, there will always be new challenges, new anxieties, new difficulties in his path. Because of what all three of us learned in parent training, Henry is not just aware of his feelings but can identify them and verbalize them. He has acquired wonderful coping and communication skills, all which continue to evolve. He is able to adapt and generalize these skills into his every day life and learning. He is happy. He is healthy. And he has very proud parents that are positive of his success!

ABA and positive parenting~it truly is what’s inside the program and inside us that makes all the difference.


Coping…??? Not so much.

As I begin to type this, it is just minutes before 6:00am CST. I have now been up since around 3:30am. Henry woke up with a dream. He didn’t say it was a bad dream, he just wanted me to lay with him for while. Hard to resist when he just wants some quiet snuggle time. At 4am I crawled back into my own bed but could not get back to sleep.

My mind was racing all over the place. And then suddenly my stomach seemed to leap up into my throat. I forgot to pay our Discover bill! Damn! I glanced over at my clock which was  glaring red. 4:32am. Double damn! My alarm was set to go off in about 15 minutes anyway so I hauled myself out of bed and down to my office cursing myself all the way. I quick threw some money at the credit card bill via online bill pay as if that would make it all go away. I was dreading having to tell Grant that our bill was going to be late. He probably wouldn’t be up for at least another hour. I spent the next hour or so feverishly working to clean up my office space, get bills in order, and organize our donation lists (with pictures) for itemization for future income tax returns. As if this would help erase or make up for the late bill. In case you are not up to speed on the whole spring cleaning/donation fiasco you can catch up here and here.

Grant knows I haven’t been coping well. I can’t seem to get anything done or keep track of anything. I am overwhelmed by the little things so then too the bigger things are doubly overwhelming. I am forgetting things. Losing things. Often.  Last night Grant watched me tear through one of my cabinets looking for a lid to a container all the while ranting to myself about how “the lids always disappear!” and “where the heck can they possibly go? Who uses a lid without the container? What would you use just the lid for?” I was feeling a bit crazed and this missing lid was about to push me over the edge. Just as I was about to search for another container with its lid, I saw the missing lid sitting on the counter, where I had put it while I was filling its partner. Oh.

Grant: “Babe, are you okay?”

This was just one of my many questionable “episodes” as of late.

Me: “No. Not really. No.”

He looked as if he was trying to absorb and process my response and just ended up looking at me helplessly.

I remember an e-mail I received some months back from my friend, *Hermione*, in response to one of my blog posts. I laughed at her perception the first time I read it and certainly it gives me a good chuckle right now.  Hermione has a daughter *Rose* who is just 6 months older than my oldest daughter, Molly. We have commiserated over the years through the pre-tween, tween, and now teen years.

From Hermione: I have been reading your blog…. You are quite articulate.  You describe so well the mixed emotions…. Happy to have a diagnosis that will give Henry the assistance he requires but all the scary negative emotions of the diagnosis, which is still hard to hear, even though you said you knew it was coming…

 Anyway, you sound amazingly skilled at handling all this. *Ron*  and I are barely able to cope with a “normal” teen…. Thinking of you and Grant and Henry and sending positive energy your way.

Articulate? Amazingly skilled? Are you kidding me? Upon my first reading her e-mail, I was immediately questioning that she even was reading MY blog!

She goes on to tell me what she’s been up too; working, reading, quilting (or rather, her not quilting),  and how she and Ron are constantly at odds with Rose, how Rose wants her room painted black and Hermione’s attempts to make is less black by trying to compromise.

“…. So although she may view it as “goth/modern”, I suspect everyone else will view it as old-fashioned and Amish.”

Quick side note: We too have compromised on the black in Molly’s bedroom. She got new black curtains and some new black decor to accent her already purple and lavender walls and bedding.

Hermione tells me of  her and Ron’s trials and trauma and drama with Rose and it all sounds familiar…except in our case, Molly wants to do everything and be brilliant at it with no effort or practice and then complains about it.

“[Rose] wants to quit piano…. At which point she will be doing nothing. Nothing at all, except texting and watching Anime and doing homework. No sports, no interests, no extracurriculars, no hobbies,  nothing at all. Except homework and being nasty to her parents. Ron comes home and goes into our room and hides. Comes out for dinner and goes back in again. And then Rose is crushed he doesn’t pay attention, but when he does, she is so often nasty…. He over-reacts and she needs to be kinder. It is all driving me crazy. Both of them. And then the dog got sick….. but nothing to complain about, really. How you do it is beyond me and you have my highest regard….Hermione.

 Did I mention that the *Weasleys* are big Harry Potter fans? Anyway, here was my response back:

 Here is my secret to coping (if you can even call it that): Alcohol, Hermione. Alcohol. That and making friends with Zoloft.

 Keep in mind that sounding skilled and actually having the skills are very, very different things! We get by. We laugh, albeit sometimes quite maniacally, to avoid crying. Molly is at odds with Grant constantly. The ONLY reason she and I are not at the same odds quite as often is I just tune it out. When I just can’t take one more snide remark or sneer from her I just shut down and leave the room. I try my best to avoid any kind of raised voice at all. This is not my strong suit but practice is forcing me to get better at it.  

We also have been trying to apply ABA strategies that we learned at TouchPoint for Henry to all three kids. That is becoming easier too. It’s not usually very fun but at least the verbage is getting easier for us. Yelling just fuels Molly’s fire. I now try to state what is expected of her and remind her of whatever the consequences may be and then I walk away. She has been known to follow me around the house for HOURS whining and complaining, yelling, screaming, slamming things, getting in my face….and I just keep walking away, avoiding eye contact, every so often repeating the expectations and the potential consequences. I pretend to read or surf the internet. I pretend I am playing a part and there is an important critic in the audience so I’d better make this performance good! (I have a friend who does the same to win an Oscar~ for myself, I just want to get out of summer stock). I don’t let Molly see me cry.

 I have not read anything in forever. I have at least 5-6 books sitting on the shelf waiting to be read. My escapes right now are Facebook and blogging and Black Phoenix Alchemy Lab scents. I am pretty sure that I am going through a midlife crisis and my alter-ego is trying to keep me busy. She has her own Facebook page. She wears glasses. She is supposed to be working on writing a book. Lots of half-ideas….nothing formulated enough to actually write down. So, we blog. Everything is a potential blog post. Nothing is sacred. hmmmmm……yep, don’t be surprised if you see this reconstituted as a blog post at some point in the future.

 I don’t see that as coping at all. I see that as a crazed, under medicated manic/depressive hanging on by a thread and shutting down and escaping whenever possible. And for the record, my oldest is not always that bad all the time. She is an awesome kid….but you know, she is still a typical, hormonal 13-year-old! So, I concluded with:

So, see, I really am not handling this teen stuff or autism stuff very well at all. I suspect really most parents don’t, Hermione. We just do what we have to do to survive it. We will survive it! Hang in there! You know where I live and how to get in touch with me if you need to! I am out here in the muck too! ~Karen

I do realize that I have a pretty sweet gig here and certainly there are MANY parents out there going through much worse, much rougher times. I get that and I am ever so thankful for my family, my job and our life.  But there are moments, lots of them lately, where I just can’t seem to get a handle on things…so much feels out of my control. I feel lost. My husband always knows how to “find” me and anchor me. But he is tired too. I ask so much of him.

So, flash forward to now…this afternoon… I’m tired, anxious, and have LOADS of things I need to do. And I am still not getting any one thing done. The little ones are “playing” by destroying the basement family room. Laundry did get started but just that, started. At some point I am going to have to do some work that I actually get paid for… I guess I will try to squeeze that in sometime after I hard-boil about 2 dozen eggs for the family fun night of egg dying and decorating.

Oh, yeah, and that late Discover Card bill? I was so freaked out about it and worried we would lose our low APR, and Grant was too, that he called the company. Turns out I had paid that bill early sometime late last month. So, we weren’t late at all…

Oh yeah, and now I guess I CAN mark one thing off my list as complete! Blog post. Done! Now, where did I leave that laundry basket…?

The Undertow

I like routine. Even if it is the routine of the ebb and flow, the highs and lows, of being immersed in the autism spectrum. I can deal with those waves that produce somewhat of a rhythmic rocking as we float along. The gentle ups of good, easy days along with the downs of harder, more challenging days. It’s all okay. Easy-breezy. We will deal with things and move on as the Spectrum lifts us up and pushes us down throughout our lives. 

But the Spectrum has a fierce undertow. At least my Spectrum does. And sometimes that undertow suddenly reaches up its watery arm and grabs me and yanks me down.

This morning began as an average day for us. Everyone is going about their daily morning business. The usual ebb and flow. The little ones are ready for breakfast and happily come to the kitchen. Lucy is getting her own yogurt and Henry is moving randomly about the kitchen as I get plates and cups out. (This is an “up” wave) Then, what goes up must come down. So I begin my short little dance with Henry to not only get his attention but then to get him to tell me what he wants for breakfast and then have him show me he is ready for breakfast by sitting in his chair. (this little dance is a “down” wave. But just a little ebb. One that is routine for the day).  And these little waves are how we move through our day in just about everything we do. It’s all fine. We are managing.

Later in the morning all continues to go well at our usual pace until…we were in our family room. The little ones were playing happily and I was actually getting some work done at my desk in my office area which opens up into the TV and play area. Henry came to the middle of the room. He looked scared. Tears were welling up in his eyes. I glanced at him over my shoulder from my desk and I could clearly see he was getting upset but trying to fight it. I did a quick assessment of the moments just beforehand. I had not heard any loud noises, no screaming or squeals, or fights over a toy. What the heck happened? And this is where the undertow of the Spectrum pulls me down to its disturbing depths.

“Henry, what’s wrong?”

“Mom, I broke it! I can’t help it! I can’t control my brain. It’s hurting my brain!”  He is crying now and I can hear the anxiety in his voice and almost FEEL it in him as I pull him close while he is physically pressing his hands to the side of his head. He cannot be consoled just yet. He continues to cry out about not being able to control his brain. I finally get him to calm down enough to understand that he broke the lid of the big plastic container we have that stores boxes of puzzles.

I have no idea how or why the lid got broken. All I can think about is how disturbing Henry’s words are. “I can’t control my brain.” “It’s hurting my brain.” He continues to press his hands into his head and lean into me. Hard. I have my arms around him tightly hoping that the pressure will help him.  I am so panicked by his words that I struggle to focus on calming things to say to him. I can’t imagine what he is seeing in his mind at that moment that it is hurting him so.

“It’s okay.” I tell him. “It’s just a lid. Now is the time to use your options map. Remember? Take some deep breaths. Count. Can you tell me if you hurt. Does your head hurt? Do you have a headache, Henry?”

He starts to take a breath but then glances over at the broken lid and starts in about his brain being out of control again. And the crying begins again.

“Okay, Henry, what else does your options map say. Tell me what else you can do when you are upset.”

“Take a break.”

“Yes, Henry, good job!  Take a break!”

“But I can’t! I can’t! I broke the lid and my brain is out of control and I don’t understand! I don’t know!”

Oh God, my heart feels as if it is literally breaking at this point. There is physical pain in my chest and I am willing myself not to freak out over Henry’s words! Focus on the options map I am telling myself! Henry is clinging to me and crying still.

“Okay, Henry, let’s take a break, okay? The options map says we can walk away too. Let’s do that. Let’s walk away right now and go upstairs for a bit.” He literally wraps himself around me, legs and all, and I pick him (which is getting to be no small feat at 40 plus pounds of solid boy!). As we walk by Lucy, I see she is still playing with her Barbie’s and watching whatever is on TV (probably the Bubble Guppies, her new favorite show). I tell her we will be right back.

“Okay, momma.” At 4 years old, she gets it. She lives it. She doesn’t always like it but it seems she has resigned herself to it.

Upstairs Henry is calming down. We sit on my bed and I hold him. When I ask him if he can tell me what he sees in his brain that is hurting him, he still can’t tell me.  I hold him tight and we rock. I tell him that HE is in control of his brain. HE is the boss of his brain and HE tells IT what to do.

He is no longer crying but he keeps holding me tight and burying his head into my neck that is now wet with his tears. When I feel him loosen his grip I move so he has to look at me. (another difficult task!). But he does and I tell him again that he is in charge of his brain. And he controls his brain because he is smart and good and strong!

I don’t know how much of this he actually understood but he said he did and he was smiling at me. Then he started talking about blocks and train tracks and save for the one last tear that was still on his cheek, all was forgotten. Just. Like. That. He was off back downstairs to resume his play.

Inside I am still screaming! What goes on in my son’s head?!?! Why can’t I understand?!?! Why can’t I stop whatever it is from hurting him?!?!

I forced myself to let go of the disturbed feelings I was having. We will deal with those another day. Take that Undertow of the Spectrum!  We have escaped your grasp once again and we swim up to the surface to BREATHE!

Our Funny Valentine


“C’mere, teddy bear.”

When my son says this to me I know he wants to cuddle and give me a hug. He leans toward my cheek and I am not sure if I am going to get a kiss or a raspberry; with either one we both giggle. Henry has an infectious smile and a twinkle in his eyes that only mean trouble!

He knows funny. He teases with the purpose of getting a laugh…or getting away with something. Sometimes it’s both.  Sometimes he tries to be sly about it, keeping a blank face, his mouth set in a straight line. But he just can’t control the tiny twitch that reveals his dimple and then he’ll grin and when he can’t hold that back he will give you a full, gorgeous smile.

Henry  tells us he loves us, spontaneously, not just as a rote response to us saying it first. But he didn’t for a long time. He couldn’t identify emotions in pictures and certainly not in others or in himself. He has always been one to cuddle but on his terms, of course. Expressing his experiences and emotions are  difficult concepts.

I wondered (and worried) whether the concept of feelings, emotions, would be something that Henry would ever understand. Sure, he was slowly learning the appropriate words. But would he, could he learn to really connect on the emotional level with others.

“I love you, Henry.”

“I love you, too.” No real inflection of tone, no sense of feeling behind his words. Just memorization. I learned to accept that and I would take those words into my heart and there I would place  feeling into them for him. For me.

Throughout our days I  try to show examples of happy faces and sad faces, angry faces, faces that are surprised.  I point out these emotions  in his favorite TV shows or movie, on my face, on his sister’s face. I  try to get him to copy my expression. I encourage him to point to a happy face or sad face.

I have been met with a blank expression. Many more times Henry would just walk away or start talking about something else.  There was no interested or even a hint of comprehension of anything outside of himself.

And then one day we were coming home from school and from the back seat I hear Henry say to Lucy, “How was your day, Lucy?” I held my breath wondering if he would just continue to talk through it about whatever he was seeing in his mind but there was quiet. He was waiting for Lucy to answer!

Soon after that, one evening Lucy was crying about something at bedtime and Henry jumped out of his bed to give her a toy. Suddenly he was dancing around making silly faces.  He was trying to cheer her up! Is it possible that he was slowly “getting it”?

Another evening, big sister Molly was in tears over some homework. Her voice was raising in frustration and Henry asked,”Molly, what’s wrong? Why are you sad?”

Molly being too upset to talk, I answered for her, “Molly is sad because she is frustrated about her homework.”

Henry turned back to Molly and said, “Molly you should check your options map.” And then he proceeded to list all of the “green-light” options for what you can do when you are mad or frustrated or upset. And still then continued on to SHOW her how to take deep breaths and count! (Score a perfect 10  for ABA!) He was making the connection between feelings and actions.

Some may say that Henry is just learning to memorize the correct response and not really feeling what he is saying.  I think that is part of learning about emotions.  He is learning to put words with feelings  AND feeling into his words. When he spontaneously smiles at me and says, “I love you, Mom.” His tone changes. I no longer have to put my own feelings onto his words.  He is doing that all on his own! We are having to prompt him less and less about saying thank you when he receives a gift and when he does say “thank you” there is a tone of sincerity.

Henry does have feelings and he is beginning to understand those feelings. I don’t wonder about him getting this concept any longer. He sometimes has trouble expressing them but I do believe this will come in time. You can see he is trying. He will learn to do this in his  own funny, quirky way which may be very different from most of us but I think that is okay. That’s how he rolls.

It may seem funny or odd to have to practice emotions and appropriate emotional responses. For us, our daily lives are filled with practice. Everything is practice.  Feelings and emotions are such difficult concepts for most people on the spectrum. Deficits in this particular area is one of the criteria for being on the autism spectrum to begin with!  So, we’ll just keep practicing.

Last night as Grant and I were tucking the two little ones in their beds I heard Henry say to Grant, “Happy Valentine’s day, Dad.”

“Happy Valentine’s Day, Henry. I love you.”

“I love you too, Dad. Now you have to tell mommy happy Valentine’s day and give her a hug.”

Grant responded as I watched from Lucy’s bed and wondered how this was going to play out. “Okay, I will”. Grant turned to say goodnight to Lucy and Henry said, “No, now Dad. You have to tell her now and give her a hug and kiss.” He was watching us for practice I guess? Silly little dude.

So, Grant and I turned toward each other and wished each other a happy Valentine’s day. We said “I love you” to each other as we hugged.

“Uh, Dad, you gotta give her a kiss, too!” So we kissed. Both kids were giggling and we proceeded to switch sides of the room so Grant was saying goodnight to Lucy and I went to say goodnight to Henry. He threw his arms around my neck and said,” Happy Valentine’s Day, Mom.”

“Happy Valentine’s Day, little dude. You are our funny Valentine and we love you.”

“I love you too, Mom.”

There is no better Valentine’s gift than that!

Two Amazing Things!

With today being Martin Luther King, Jr. day I had planned to write few thoughts on what Dr. King stood for and how that has impacted our world today and specifically how this also applies too and includes people with special needs. But then today two amazing things happened and I just can’t get past the happiness of either, so though MLK and his principles are certainly very important…they will have to wait for thought and discussion on my blog another time. So without further ado:

Amazing Thing #1: the youngest FINALLY gave up the pull-ups at home and now uses the potty!!!! (She’s been going on the potty all year at school but absolutely has REFUSED in no uncertain terms to go on any other potty. Really?!?) Technically this breakthrough happened yesterday afternoon but since it carried over into today (for all bowel habits, no less!) I am considering this a done deal! I was prepared for our son to have some challenges in this area a few years ago given his spectrum challenges but overall, he was way easier than this last precious lamb of ours! We are officially done potty training in our household!

Amazing Thing #2: We had just the most wonderfully successful play-date at our house today!  This was the second time our new friends have come for a visit and even though almost 4 weeks had passed since the last visit, all three kids did wonderfully!  Henry did have a bit of a meltdown at one point (because, you know, as a somewhat responsible parent, I feel that throwing toys from standing on top of a table is not a good thing, especially with guests as witnesses…or targets!). I was able to remove him from the situation without too much of a struggle and was actually able to get him to review his options map. When I asked him to then do his deep breathing and counting at least three times he told me that he would rather do it five times. Wow! Look at us workin’ the ABA! That’s a big step! He was able to return to the family room/play area (aka The Lab) without further incident. He even kept his clothes on the whole time our guests were here! This is something we have been working on and finally we are seeing some success in this area as well!

Meanwhile the girls continued to bond and are actually learning to play together! Lucy being the “neuro-typical” of the two, so wants “E” to be her friend and I think today that happened! Lucy is SO very social and chatty ( and “chatty” may be a gross understatement here), that I am guessing that poor “E” is finally just learning to give in and go along  just to get Lucy to shut-up! 😉 At one point both girls headed up the stairs together to check out who knows what and both “E”‘s mom and I were so surprised that I think we were both afraid to breathe! They came back down after only a minute or so but once they got the okay from us, back up they went to play in Lucy’s room! There was definitely a two-way conversation going on between the girls! Again, more breath-holding and tears welling up in our eyes!

I am so THRILLED that “E” feels so comfortable here already to venture out just a bit beyond her mom and make a new friend! Actually “E” has all five of us here as new friends!  And, to give much credit to our new friends, our family is equally comfortable to have them come to our house! Just to back track a bit, when I first told the kids last night that “E” was coming to play even Henry was excited about it! “That’s my camp-school girl!” He was reviewing the rules for when visitors come and he kept reminding me last night about what a good listener he was  and what good behavior he was having so his “camp-school girl” could come over! This is another big step for Henry! That fact that he is learning to verbalize wanting social interaction is big! (He just started being able to express that about his cousins over the holidays.) Hey, nevermind that he did not actually interact with the girls too much once they got here…but I am thinking that in this case it was more of a boy being out-numbered by the girls and he did not want any part of “girly” play. That is fine with me! He stayed in the general area and played with his train tracks that his older sister was desperately trying to help him with so us Moms could chat a bit ourselves. What a great morning for us moms too!  🙂

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