Siblings in the Shadows

“It’s not fair! Everything you say is always about Autism, Autism, Autism! You always write about him and put his pictures everywhere!”

My firstborn gets a little sensitive about my website and the training classes, workshops and marketing materials I create. Sure, I can remind her about all the special privileges she receives and the times we go places without her brother. But that isn’t what she wants to hear. She wants to know that she’s valued, unique, and most of all, heard.

Here are some things I’ve learned along the way about how to make sure siblings feel included.

Don’t keep them in the dark. The unknown is scary to children – especially when it’s surrounded by energy that may be tense and anxious. They are extremely sensitive to your feelings, so sugar coating or avoiding the subject of Autism in the home causes more disharmony than protect your child’s feelings.

Additionally, you should be open (in an age appropriate way) about what’s behind certain behaviors and that they are rarely, if ever intentional. Impulsivity is hard to explain, but there are some amazing children’s books out now on the subject of siblings and Autism. It’s a great place to start.

Consistent rewards. It’s easy to get caught up in praising your child with Autism for every mark of progress and milestone. It is necessary. You may be missing the fact that every reward is also being counted by the sibling… and if the score isn’t evened they will remember.

Find a way to celebrate and recognize every achievement from all of your children as special.

This can also go the other way: many times my daughter will feel that her brother doesn’t get a just punishment for something she may have gotten in trouble for previously. Situations like that can indeed be a sticky-wicket, as your child with ASD rarely breaks rules intentionally. Unwanted behaviors still need to be addressed, and it helps to explain to siblings that discipline may be unique to each family member but no one is “getting away with it”.

Sibling-only time. Often parenting our child with Autism requires an unequal amount time and energy for that child. It’s so important to schedule regular one-on-one time with your neurotypical child. Whether it’s a ritual of ten-minute blocks each night before bed or a once a week “girls night out” (in my case it’s my daughter), this time is to be treasured together.

Support and expectations. It’s important for siblings to feel that they are not alone in their experiences. There are many sibling support groups to share their struggles and feelings, but don’t force it. In our case, my daughter had a good time visiting one of our local groups but quickly discovered that being with people that focus on talking about her brother still makes her feel like the world revolves around him. She flourishes when involved in a group that is uniquely hers – an improv comedy troupe, art school, and Dungeons & Dragons are some of her favorites.

Equally as important, do not expect your child to be overly responsible for the child with Autism. Unrealistic expectations can lay an unbearable amount of pressure on siblings. This isn’t a free pass to skirt all family responsibility; check in often and encourage open communication throughout the journey.

What are some ways that you keep siblings out of the shadows and keep things “fair” in your house?

Regression or Progression?

I recently did my mid-integration checklist and interview for Justin’s Listening Training. As he is getting ready for his next intensive, I wanted to share some amazing gains I observed – new behaviors that I attribute to his first round of EnListen® and additional supports from home, including:

  • Introduction of Chewelry to redirect chewing (I’ll be dedicating an entire blog post to this great product shortly!!)
  • Addition of digestive enzymes, probiotics, and Omega Fatty Acid oil to his diet
  • Increased yoga and fitness routines after school

Understand that every child is different and may or may not show the same gains or at the same rate, especially after only the first intensive. These are things that improved in my child:

  • He now understands and carries out multi-step instructions (e.g., “Put on your socks, brush your teeth, and meet me in the kitchen.”)
  • Bathroom experience: his body now signals that he has to go – no more accidents (thank you!); it is an easier experience – 15 minutes in the bathroom instead of 45!
  • He is aware of possible consequences before proprioceptive crashing – Justin will now run up to things and stop and think first about whether or not it might be a good idea. He redirects himself for the first time.
  • Empathy, remorse – he consciously apologizes after accidentally hurting someone and doesn’t repeat action!
  • Fine motor improvement – he is better able to dress himself; he even wore jeans for the first time and buttoned them with no assistance!
  • Initiating bedtime on his own – he’s getting tired earlier in the evenings, and bedtime is no longer a long and drawn out process (except when he’s being a typical kid!)
  • Aware of why he has certain behaviors – when asked why he is displaying a certain behavior he is able to provide a logical answer rather than tuning out or shrugging it off
  • Report card improvement
  • Little to no spinning – much less stimming (excluding the return of recent verbal outbursts)
  • Realizing where he is in space – there is much less holding the walls when walking and chair tipping when sitting
  • Coordination, balance improvement – squatting, skipping, hurdles and obstacle courses, jumping improvement
  • Tactile gains – introduction of new clothing materials that previously were not tolerated
  • Initiating affection – this is a biggie! He is equating more with people and less with things.
  • Showing more independent thought and less echolalia (and much less regurgitated TV speak!) when asked questions or engaged in a conversation

Less than desirable changes noticed:

  • Expressing more frustration – this is due to experiencing certain feelings for the first time. Listening Training has begun the process of allowing him to be receptive to and in touch with his emotions. Justin will need to now learn how process those appropriately.
  • More meltdowns
  • The return of noises, verbal outbursts and personal space issues
  • Less motivation to complete schoolwork

Although this may appear to be a regression in behavior, I realize that Justin is experiencing a reorganization of how he sees the world and processes information. It’s going to take time for these changes to be integrated into daily practice. I have to dig a little deeper. Some of these behaviors are not necessarily a regression, rather familiar ways of coping with new feelings and experiences.

He is also reflecting his new feelings of frustration through verbal stimming and needs to learn new and appropriate ways of expressing them.

The next intensive will continue to address sound sensitivity as well as introduce organizational skills and theory of mind.

It is easy to focus on the behaviors we don’t want from our child when we see them, and immediately assume things are headed south once again. I don’t know about you, but raising a child with Autism is a roller coaster ride full of gains and regressions. It’s part of the process and I wouldn’t have it any other way.

Looking at this progress now on paper, he truly has made some incredible gains. It is imperative that the school and I continue to support him with reward systems, redirection, and behavior alternatives as he learns to integrate information in a new way.

Consequences, Consequences

There was a time when two to three days of the week I’d receive a phone call from the school demanding I come pick up my son for behavior they could not control. As a single parent working full time, you can imagine how well this went over. Aside from job concerns, I also began to suspect that my very intelligent child learned that if he “kicked it up a notch” he got to go home with and spend the day with Mom. What may have started as behavior he couldn’t help soon fused into a nice culmination of sensory and social issues with a dash of escapism.

Some of the behavior described to me included loud, disrupting noises in the classroom and quickly elevated to collapsing on the hallway floor refusing to move, screaming, and literally bouncing off the walls. This resulted in multiple visits to the Principal’s office, being passed off between free teachers, and ultimately a phone call to Mom with the desperate plea that he couldn’t be “reeled in”.

Eventually I called another IEP meeting to see what we could do differently. After all, the definition of insanity is doing the same thing over and over and expecting different results, right? Upon a detailed description of these days where Pandora’s Box was repeatedly opened, I discovered two things:

1)   If Justin appropriately asked for a sensory break or self-corrected, they let him go to the Math lab, which was his favorite small group activity.

2) If Justin spun out of control and the staff went through the usual list of attempts to calm him, they would let him go to the Math lab, which was his favorite small group activity.

That’s right, there was no delineation between reward and consequence. They were one in the same.

(to illustrate that I’m also learning along the way, I have been known to demonstrate the same behavior with video games in lieu of Math lab… see the picture?)

The solution: a result of two hours of brainstorming

Rewards are for appropriate behavior, or for the ability to recognize and ask for help if he can’t self-correct.

When a red flag is established, in his case it was blurting out noises in the classroom, he had one opportunity to reel himself in or ask for assistance. If he did not, he received a warning, and then was to be taken calmly to a previously established consequence. No parading up and down the halls screaming, no being passed off from teacher to teacher, no pleading or bargaining… straight to the consequence. Do not pass go, do not collect $200.

I found that this eliminated the excess drama and need to get attention from all our reactions. Learning that he no longer got to go home for behavior issues quickly stripped away the formerly blended lines between what he could help and what he could not.

It’s a learning experience for all of us: parents, teachers, and school administration. It’s worth it to take the time to get on the same page with all players and accept that each solution may be perpetually evolving.