Accepting the Label

We have been struggling lately with our daughter’s emotional behavior. In typical ASD fashion (and to an extent, in typical 3 year old fashion), our daughter cannot verbalize emotions at all. Even though she is highly verbal,  you will never hear the words, “I feel happy, I’m sad, I’m mad, I’m angry”, come out of her mouth. She knows what the emotions are, and she visually recognizes the facial expression of them, but she seems to struggle with communication of those feelings, when it applies to herself. For example, say she’s upset, and you ask her, “Ashley, do you feel mad?” She will instantly hide her face, and scream, “I not!” (despite the fact that her red, tear-streaked face and screaming voice tell you otherwise). To associate that feeling with herself overwhelms her.

Our daughter has a volatile temper, with very little frustration tolerance. She gets angry very quickly, and is just incapable of handling her anger with anything but physical aggression and screaming. Her verbal skills become non-existent when she’s angry. While we deal with this on a daily basis in our house, lately it has been getting worse. She has been increasingly aggressive, especially with myself and her brother, and is now starting to add biting to her arsenal of hitting and kicking.

An example of her reactions would be along the lines of this: the other day her brother did something to annoy her. Nothing major. However, it upset her enough that she took a kitchen chair that was nearby and cracked him on the head with it, hard enough to bruise him. This earned her a timeout. When the timeout was over, and she was starting to calm down, I tried to talk to her about her behavior. I crouched down, made her look me in the eye, and asked her, “Ashley, is hitting bad?” She nodded her head yes. “Ashley, did you hit Thomas?” She nodded her head yes. I  continued, “I know you’re mad,” and at this she started hiding her face, but I continued on, “But Sweetie, hitting Thomas was bad behavior.” For this I was rewarded by screaming and a crack over the head with her doll. This is just but one small example of how she struggles to handle her emotions and emotional behaviors.

That night, the program director for her ABA therapy called for her monthly check in. I talked to her about the new biting, the increasing aggression, the continuing problems with frustration and anger tolerance, the inability to handle emotions, the extreme need for things to go her way, our frustration of how despite repeated talking-tos and discipline, we just can’t seem to get through to her.

During our talk I realized I was guilty of something which is going to sound odd – I was guilty of thinking of her as “normal”. Our daughter is very high-functioning; while she still lags somewhat in her receptive language skills, she has otherwise excellent verbal skills, and after five months in the ABA program she has made truly unbelievable strides in her abilities. She has turned into a social butterfly who seeks out other children, who is now engaging us, who is becoming increasingly physically affectionate, and who is turning out to have a hilarious imagination! It is extremely easy to look at her and think of her as wholly normal, ourselves included. And in today’s anti-label society, this would be considered a very good thing.

Except. Except she’s still not wholly normal. As her father, myself and her therapist, being the only ones to deal with her on a daily basis, know, she still has several areas of struggle. She has the extreme controlling tendencies of Asperger’s – Ashley’s life is lived on the terms of “My Way or the Highway”. While improving, she still struggles asking for help at times, which when combined with her low frustration tolerance, can often end in aggression and screaming. She is overly independent, to the point of being unsafe (like grabbing steak knives to try and cut open her new doll, instead of asking us for help). Often times when she is trying to ask, she will not use words, and instead will point, or tug on you. Despite repeated warnings, discipline and punishments, she still struggles to grasp the concept of danger which means she is constantly trying to touch or grab  things that are hot or sharp, or she runs away in areas with traffic. She takes risks in her play that other children her age would never dare to. She has a very high pain tolerance, which of course only contributes to her lack of fear. She also struggles to control her obsession to get into things she’s not allowed to have, again despite repeated discipline etc… As already mentioned, she struggles with talking about her feelings, and she really struggles with apologizing – it seems to be a very overwhelming thing for her.

While improving, she still has sensory sensitivities. She is especially orally seeking, and will eat odd things  like flour and baking soda, she is obsessed with eating butter. She will try just about anything – which over the last couple years has included dishwasher detergent and anti-bacterial hand cream. She likes to bite the table at times. She can get stuck on repeating words (like the morning at Mass where she repeated the phrase ‘Upside-down!’ in a little sing-song chant over and over the entire time we were there), she still can “shut down” in overwhelming social situations, meaning she will not look at anybody, make eye contact or talk – even to us.  While she handles routine change very well, she does not handle physical change as well, especially with regards to her clothes. New outfits tend to upset her for some reason, and we normally have to show her new clothes a few times before she will allow us to put them on her. She does have a “stimming” behavior that she does (typically a finger flicking), and sometimes in that stimming there is a routine that she has to do (like one day with her baby doll, she would rub her hair three times, then touch the doll’s face to her nose, then repeat); however, hers is so subtle that I doubt anyone but myself or those around her frequently would ever notice.

And so, with that, I realized that I had been treating her as normal, I had been disciplining her as normal, and I had been placing normal expectations on her. How I handled her tantrum that day, is how I would have handled any other child’s tantrum, and I was wrong to do that. Oh, don’t get me wrong, she had to be disciplined for the aggression she displayed towards her brother and I – no question about that, and I was right to put her in time-out.  However, I should have handled things differently after the time-out was over. I should have taken her emotional communication limitations into consideration. My talk with her therapist also helped me realize that in treating her as “normal”, we were making things harder for her. We know that she has real limitations in her capacity for expression, understanding, communication and self-control, and yet, we were doing nothing to make it easier for her around the house.

Her therapist had urged us in the past to start using visual aids around the home to set limitations, with the goal of reducing some of the power struggles and the constant obsession to get into things that are off-limits. This would in turn likely help reduce the number of tantrums and meltdowns we have. And yet – we hadn’t done it. Why? Because I looked at her as normal.  Visual aids (or PECS) just didn’t seem like they were for “my” child – after all, she is extremely verbal. Her therapist pointed out that despite her abilities, auditory input can be a struggle for her, but that she excels with visual cues. For us to constantly say, “No, Ashley,” or to place auditory limitations (“Just two, Ashley!”) really means nothing to her, hence why she seems to ignore us. And of course, one thing leads to another which culminates in frustration and anger for both us of. But for her to see “NO!” or for her to visually see a limit, has a completely different effect.

By not accepting or acknowledging her limitations, we’ve been making life harder for not only her, but for our entire family. She also recommended using visual cues for controlling her anger. She said the biggest thing is to catch her before she hits her explosion state, to try and give her calm-down remedies before she loses control. However, on those times she does lose it, for us to also give her visual options of  acceptable ways to release her angry energy, instead of hitting, biting, kicking, screaming etc…

So, that night, I got to work. I went online and searched for visual aides for the strategies she mentioned. In my searching I stumbled across “Zones of Regulation.” It’s a fairly simple design, working on a stop-light system. Green means “Good-to-Go!”, your child is calm, happy, is listening, displaying appropriate behavior. Yellow is “Slow Down” zone. This is where you want to catch your child – when they’re starting to get frustrated, too excited or silly, too loud, feeling sad etc… And the red “Stop!” zone is very self-explanatory. Your child has lost control and is angry, out of control, yelling and/or aggressive.  Beside each of the colors, you display visual cues of how the child is feeling, and then beside these, you place visual cues that show ways to calm themselves down.

The idea is that when we see our daughter (though this will work well with our son, too) is  entering the yellow or red zone, we will bring her to the chart  and show her what zone she is in. Our bigger hope is that she’ll be able to communicate her feelings by pointing to the emotion on the chart. We’ll then let her pick out an appropriate way of helping her release her anger or of calming herself down. Using this we will be not only enabling her to share her emotions in a way that’s not overwhelming to her, but we will both be able to maintain control – she will have control over her choices while I/we will have the control in making sure that her responses do not become aggressive.

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I realized that the color system could work really well in other areas, too, so I used it for our other around-the-house visuals. We created green “Okay!’ labels for things that she is allowed to get for herself (she has a shelf in the fridge that she is allowed to pick a treat from), yellow “Ask First” labels for things that she has to come to us and ask before taking, and red “No!” labels, for things that she is not allowed to have or get into. We made sure to include her in the process of putting the labels up around the house.

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The system is new. Time will tell how it works, I know it will take time to teach her the color meanings, something that will be continually worked on by ourselves and her therapist, however, so far the results are encouraging. Within two hours of being put up, we had a chance to put the system to the test, and it passed! She was able to point out to us that she was feeling scared, and when we remedied the situation, she pointed to show us that she was happy.

We have taken a step to accept that aspects of our daughter are not normal and we are acknowledging that she does have special needs. To deny a child’s special needs does not help them – it only hinders them. There are extremes of course. There are parents who go so far with the “Special Needs” label mentality, that they never try to teach their child how to work towards their potential. They do everything for them, “baby”-proofing every aspect of their lives, and in those instances the label does become a hindrance.

However, that is not our goal. Our goal is to help our daughter learn the skills necessary to appropriately express her emotions, how to control her behavior, and how to recognize and respect limits. I especially like how a fellow ASD Mom put it on an online forum thread: “I try to think [that] my job as their mother, is to help them overcome the struggles presented by living with an atypical brain in a typical world. Hopefully my [children] will be able to transcend some of the veil that their non-normal brains present, so they can be happy and successful in a world that is not made for them.”  No matter how severe your child’s disability is, or how minor – anytime a child faces a challenge, the goal that this mother shared, is our common goal.

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12 thoughts on “Accepting the Label

  1. I love that you’re meeting her where she is at now!

    I’ll be honest, I don’t know your family really, but I wanted to ask if you have looked at food related issues that are making the ASD behaviors even harder for her to handle? I imagine you already have, but if not I want to encourage you to look at removing things like artificial food dye from your home. Its in a ton of foods, but also sneaks into places like toothpaste, shampoo, lotions, etc. I have one daughter who, while not ASD, is extremely sensitive to the artificial dyes and loses control of her emotions if she’s had any (red and yellow are her worst, blue is not as bad). She’s almost 8. A tantrum at her age is a really difficult thing, as I’m sure you can imagine. We saw such an extreme difference after removing the dye (and see tantrums return if we add dye back into the diet) and honestly I would not have believed the difference if I had not seen it.

  2. This is exactly where we are in our life with our 4 year old son. Would you mind sharing what website you got the print outs from for your board? Thanks so much!

  3. I need to make a chart like this for my daughter who has SPD. Would you mind sharing what’s on all the labels (esp the activity choices for each level)? This would be SO helpful! Thank you for sharing!

  4. I stumbled on this while on my Pinterest. I have 2 daughters who I have been struggling 2 figure out since they were born. They are 11 and 14 now. We have been through the gammut including, counselors, psychologists, OT, Speech therapy, psychiatrists, and neuropsychs. We have had them tested and diagnosed with everything from Sensory Processing Disorders, to ADHD, to anxiety , mood disorders and OCD. We even did the Feingold diet at one point with myoldest and foubd out red and blue dyes were triggering some of her tantrums. Every time we take them somewhere new and i rattle through their developmental histories, i always get asked about Asperger’s. Took them to “Autism Specialists” in town and they wouldn’t diagnose because my child was able to look them in the eye and have a conversation. But…everything u described in ur blurb above resonated with me. You could have been describing my children. I am an educator and very well educated, but i have no clue how 2 help my girls anymore. We have done much of what u described. Would love 2 know of any connections u might have in dealing with asperger-like teens. Thanks for sharing!

  5. HI! I too, like Michelle above, continue to see specialists and continue with diagnosis like SPD, ADHD, anxiety, etc, but I have always felt in my gut that we are missing something bigger. I identify with every Asperger’s story and article. Your entry above could have been explaining our home and 6 year old word for word. I was wondering what kind of Dr. you received your diagnosis from, if you don’t mind sharing?
    I found you looking for zones of regulation tools and I completely identified with your story of visual cues…thank you for articulating it so beautifully. I am finally going to implement those now!
    You’re doing an amazing job, thank you for sharing your story.

    • Thank you so much 🙂 We’re in Canada, so the process is a bit different here. We approached our General Practitioner with concerns, who immediately referred us to a pediatrician, who was certain that it was ASD. She was 2 years, 8 months at this point. She started ABA therapy when she was just shy of 3, and we were placed on a waiting list for a full psychological evaluation. She finally had her full psychological evaluation, complete with ADOS when she was 4 years old, where they confirmed her diagnosis of ASD – Level 2 for Social/Communication and Level 1 for Restricted/Repetitive Behaviors.

  6. We have a son that is ASD and I love the PECs you used for your charts. Do you have a specific link for those? They seem much better then just the faces I have seen other locations!

    Thanks!

    • I have had many people contact me asking for the link for where I made the PECS and unfortunately, we had a computer crash and I lost all my old bookmarks etc… so I’ve lost the link, and have yet been unable to find them. What I do now, is typically search for free clip art figures “mad clip art” “hitting clip art” “stop sign clip art” etc… and use those. More time consuming, but it is nice to be able to choose graphics that you know your child will respond to. I keep searching for the website I used, and if I ever find it again, I will be posting it!

  7. I am searching for how I can help manage both of my boys behaviors and your chart looks simple and easy to follow. They are on the spectrum and i was totally relating to your post!! Thank you for posting this. Wondering, how did the labels of the ask first, no and okay work out?

    • They worked quite well actually. It’s a good idea to reward them when you see them using the NO stickers at first, especially if it’s something they previously would have tried to get into.

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