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Posts tagged ‘Meltdown’

Asperger’s & Holidays

The holidays are upon us.  And all I have to say is, ugh, can’t we just skip it all?

Living in a household affected by Asperger’s leaves us all dreading the holidays.  It is easy to understand if you think about it.  Asperger’s is a developmental disorder which affects how a person is able to interpret the world around him/her.  In our every day lives, we make accomodations to help Bass and Lulu Grace find ways to absorb the many sensory experiences in their lives.  We control a lot of their surroundings on a day to day basis.  We plan way, way ahead.  We talk, talk, talk about changes that are coming.  We limit input from sources that are distressing.  We are able to take a break when needed.  We have time to prep for trouble spots.  The holidays turn that whole system upside down.

On top of the unpredictability of holidays, we also add the stressors of people who don’t understand and may step in to discipline a child on the verge of a meltdown.  We drag them from place to place, trying to squeeze in all of the family that expects to see us.  We disrupt their daily routines.  We create tremendous anxiety with the surprise gifts, leaving them wondering if they are really going to get what they wanted to so badly.  We ‘lie’ to them with fairytales of Santa Clause (Bass was devastated when he found out that Santa wasn’t real – because we LIED to him).  We expect them to dress up and look nice – which is hard to do when the only clothes they are comfortable in are jeans, sweats and t-shirts.  We want them to be polite and friendly.  None of these things are easy for these children on an average day.

By the time the holidays are over, Jon and I are left drained, exhausted, and feeling like terrible parents.  We have learned over time that our desire to have a picture-perfect holiday is not ever going to happen.  And we are okay with that.  What we are not okay with is that the holidays also make Bass and Lulu Grace feeling disoriented, unhappy, cranky, and sad.  So how do we change that?

Well, the past few years we have made some changes to what the holidays look like to us.

1.  We try to limit outings to necessary visits.  We do NOT make the kids go shopping with us to busy malls/stores.  If they wish to do some shopping, we limit their trips to small, local shops during the daytime, weekday hours.  Better yet, plan ahead a bit and make a special gift at home.

2.  We do NOT make a big deal out of things.  As a child the ceremony of decorating the tree was much anticipated.  I have had to realize that decorating the tree can still be fun, just not with 5 people decorating at the same time.  I separate the ornaments into piles for each child.  Then they can each have one-on-one time with me decorating.  This is a simple fix while still creating that special memory.  We have had to create our own special things that are not the typical holiday experiences.  And that’s okay!

3.  While gifts are fun for many people, they create way too much anxiety, especially for Bass.  When he was young, we went to great lengths to keep the holiday exciting, building the anticipation of that ‘big’ gift he wanted.  What we ended up with were meltdowns!  EVERY YEAR!  Now we ask him what he wants.  Last year we even gave it to him a few weeks early – tickets to a concert.  Then on Christmas he got a lot of little things.  We ask if he wants his gifts wrapped or not.  Generally he doesn’t want them wrapped.  The surprise of what’s inside is overwhelming to him.  Lulu Grace also struggles with gifts, but with her being so young she also enjoys the unwrapping.  If we know she is expecting something really special, we make sure it comes early on so that she isn’t stressing about it.  This has helped to avoid the building anxiety.

4.  While we have many food traditions for the holidays, I have found it is important to also keep the favorite every day foods on hand for Bass and Lulu Grace.  Especially with Bass, all of the holiday foods are tough on his stomach.  He also has a hard time setting his own limits with food, so we have learned to make sure that whatever goodies we stock up on are going to be gone within a day.  This is especially true for candy from stockings.  We have limited candy in the stockings, with more little presents instead.

5.  The kids schedules are non-existent during the holidays.  They do not have the structure of school days.  We try to stick tightly to their sleep routine, however.  Nothing sets us up for a rough day faster than Bass or Lulu Grace being tired.  Even though we operate with a different routine, we still work hard to prepare them for what will be happening from day to day.  We talk about where we will be going, how long we will be there, and have a plan in place for them if things are getting overwhelming.  This is especially true for Christmas Day.  We open presents at home, then go to my parents (with about 30 people there), and then go to Jon’s parents.  It is a day fraught with potential for disaster.  One Christmas night as we were trying to all get in the car to go home, Bass had had ENOUGH!  He climbed out of the car, laid down in a snow bank, and refused to move.  That was our last Christmas of not having a carefully laid out plan.  We refused to ever put him in that position again.

Now Christmas Day, although we keep the same schedule, is carefully discussed with the kids.  We spend a few weeks talking about what will be happening, who will be there, and then have a plan to avoid the meltdown BEFORE it happens.  Lulu Grace and Bass are old enough to understand when they are reaching overload.  The rule is that if they are reaching their limit, they immediately find us.  We will STOP whatever we are doing.  We then go find a quiet place to just sit and unwind until they are ready to go back to the party.  Lulu Grace may want to read books or just cuddle quietly.  Bass may find a quiet place to listen to some music.  After a bit, they are recharged, and we can all go back to having fun.  And we keep our visits short and planned.  We do NOT break from our schedule.  If we tell the kids we will be leaving at 4:00, we begin saying our goodbyes and preparing to head out in enough time to be gone AT 4:00.

6.  Relatives, as much as we wish, do NOT always understand.  They think Jon and I coddle and lack parenting skills.  We have, unfortunately, heard more than once, “If that were my child, I would… (fill in the blank).”  They think that Lulu Grace is a brat.  They think that Bass is spoiled.  Rather than getting into an argument over something they will never comprehend, I have found it easier to be above it all.  Jon and I are not bad parents.  We are more involved in helping our children navigate a difficult world than many of them will ever be with their children.  We have children with good hearts, who are compassionate, kind, gentle, and loyal.  Bass and Lulu Grace both have a strong need to control their environments.  From the outside, this can be difficult to understand.  For those people who truly want to know or understand, the best explanation I can give them is that their world is like a merry-go-round, full of sights, sounds, smells, touches, going around and around.  They need to be able to focus in on one thing at a time.  That can be hard to do when there is too much going on around them.  Is it any wonder that holidays can be like torture to them?

7.  I LOVE going to church on Christmas Eve.  Growing up, it was one of the things I looked forward to the most, the feeling of peace and joy, the music filling me, the candle-lighting, and Silent Night.  I have tried, unsuccessfully, to keep this as part of our family tradition.  The sanctuary is filled to overflowing, the music is loud, the room is stuffy and hot.  Many years either Jon or I ended up leaving the service with Bass or Lulu Grace as a meltdown was building.  The joy and reason for the season are still in our hearts, but we no longer feel the need to attend a service (with people who only go to this one service a year).  I still try to sneak away with Queenie to attend a midnight mass if we can, just for my own well-being and to share that special feeling with her.  But we instill God’s presence in our lives every day.  The ceremony of celebrating Jesus’ birthday can happen in our home just as well as it can happen in a church.

These are just some of the most basic issues that we deal with during the holidays.  I didn’t even get in to the social situations that the holidays put us all in.  Throw in Thanksgiving, a school concert, St. Nick, New Year’s Eve, and getting the kids back into their normal routines, and it is easy to understand why I dread putting everyone through it all.  The next few weeks, I will write about some of our experiences over the holidays, give you some of what we have found works and what didn’t.  There are bound to be some funny stories in the making, and also some troubling ones.  Maybe you have guessed from my post, but I’m trying to psyche myself up here, when all I really want is to ask is, “Can’t we just turn the calendar to January?”

 

 

 

Soothing the Angry Beast

One of the most challenging and heartbreaking behaviors of Asperger’s that we see in Bass is anger.  It is a part of Asperger’s that frustrates me, scares me, and pisses me off!  For a long time I did not know how to help Bass manage his anger.  But without even knowing I was doing it, I was slowly giving him the tools he needed.  It’s amazing how that happens!

When Bass gets angry, it is like trying to defuse a bomb before it explodes.  I have learned to watch for some of the physical signs that anger is building, but sometimes it just comes out of the blue.  It can be really scary for Bass to have such overpowering emotions, especially when he does not fully comprehend what he is angry about.  It was really scary for me, and for a long time I allowed that fear to control how we dealt with his anger.  Once I took that control back, we all feel more in control!

I talked in an earlier post about fight or flight and the physiological responses of the body.  It was an important piece of the puzzle for me in helping him and the rest of the family to understand how and why this happens.  So I decided to begin the same process in learning to cope with Bass’ anger.

The first is to understand the basic phases of anger and how it plays out in kids on the spectrum.   I will walk through what some of the key things we have learned about what a meltdown looks like for us and some of the tools we use to help as we encounter each phase.

THE TRIGGER ~  In children with ASDs the trigger may be too much stress, getting stuck in a thought pattern, sensory overload, anxiety, the inability to communicate feelings/needs, frustration over social issues, or any combination of these things.

ESCALATION ~ Escalation can go from zero to  60 in a milli-second!  You may not even have time to process what may have triggered it.  You are busy trying to head it off before it reaches crisis phase.  There are times when I am able to step in at this point and help Bass de-escalate – if I can get him distracted or off-course, help him by giving him the words to express his frustration, offer him a snack or a cold drink, give him space and time to use his tools to de-escalate.

Bass sometimes tries to de-escalate with food.  He will head to the kitchen and begin tearing apart the cupboards, looking for something to soothe the angry beast building inside him.  We have worked hard at getting him away from that tendency.  His tendency to gain weight is already high because of his meds.  So we have been trying to educate him on healthy choices every day.  We just don’t even bring the high carb, high sugar foods in the house anymore, because during a rage, these are the things he looks for.  I have found that keeping him nourished throughout the day with small snacks and making sure he stays well hydrated in general makes for a happier Bass!  He is pushed over the edge much quicker if his reserves are low!

But there are also times where no matter what he does or I do, there is no stopping it.

This is DEFINITELY NOT the time to begin arguing or questioning his feelings.  He does not need to be told that he is being irrational or silly.  He needs to be respected and listened to, even when he is being irrational and silly.  To him, whatever has upset him is life and death.  Not validating that is a quick way to escalate the situation!

We also try to eliminate all outside distractions.  When we are home, we ask his sisters to find somewhere else in the house to be.  We try to limit him to a specific area, instead of him flying all around the house.  There are times where he cannot get his thoughts to come out through spoken words.  We encourage him to write down what he needs to say.  We encourage him to listen to music.  We do not put a limit, within reason, on the volume of his music.  This works a lot of times at helping him de-escalate.

If Bass is able to stop the cycle at the Escalation phase, this is the point where we reward him for making good choices.  We verbally thank him for taking a time-out, praise him for keeping his emotions in balance, and find a way to reward it.  The reward can be as simple as suggesting that a hug would be good (we don’t hug him uninvited, but we allow plenty of opportunities for him to hug us), a ride in the car listening to music with either his dad or I, a drive to a local restaurant for some quiet time to sit with coffee and a snack and talk.  We have had some of our best talks and breakthroughs by hanging out at a local restaurant.  It is a safe place for both of us.  Our discussions are civil and heartfelt.  We do not yell or get upset.  We have talked about bullying, middle school, puberty, girls, emotions, life, relationships, family, friends, and so much more.  We also use this tool during the post crisis phase as a way to discuss what Bass is feeling, to help him identify his emotions and learn better ways of managing them.  This has been invaluable time for us and for Bass.  Never underestimate the value of your time in your child’s life.  They listen more than you think they do.  Being able to relay some of my own experiences with bullying, relationships, family, and anger management at his age have helped him to realize that he is NOT alone.  Being able to put myself back in that place and help him understand that I really do realize what he is going through has been invaluable to him and to me.

But, alas, we are not always able to get him to de-escalate!  And then we are in CRISIS MODE…

CRISIS MODE ~ He has fully ramped up.  We clear everyone out!  Meltdown has occurred!

We have provided clear rules of behavior for his rages, ensuring that he does not take his rage out on people.  There is never to be physical violence against another person, and he follows that rule.  He is not allowed online when he is in a rage.  If he wishes to express his feelings, he needs to do it directly with a person, not online.  He is not allowed to destroy property.  He is not allowed to leave the ‘safe zone.’

In the past he has become physical.  He has kicked holes in the wall, broken doors, smashed glass, broken a skateboard in half, turned mattresses off of beds, knocked dressers over.  As he has gotten older, his meltdowns have gotten scarier, for him and us!  He is over 200 pounds and 6 feet tall.  His strength is enhanced by his rage.  As we have learned how to better cope with his anger and help him learn some tools to manage his emotions, we have seen less and less physical destruction.

He has a punching bag in the garage.  He has a kicking bag in the back yard.  He can walk laps around the outside of the house.  He can crank his music.  He can throw eggs at a tree.  He can scream into a pillow.  He can spend some quiet time with his dog.  We have even taken a whole watermelon and allowed him to smash it with a hammer.  It was so much fun and such a mess, that the crisis was quickly averted.

Crisis mode is also the point where fight or flight kicks in for Bass.  We reinforce with him at this point that if he leaves our property, the ‘safe zone,’ we have no choice but to call the police in to assist us.  There has been a time or two after putting this into place where he just cannot pull it together and leaves the ‘safe zone.’  It was really hard the first time for me to call the police, but I did it!  He is crafty when he takes off, and it has taken several hours to locate him at times.  When he is located, he really panics.

It is really important that your local police be educated on Asperger’s or ASD’s, no matter how young your child is.  This is your opportunity to begin that education process, so that when or if you ever need help, the tools are already in place.  Call your local police department and ask for an Emergency Form.  They will give you a form to fill out, providing them with details they would need in case they are called in to assist you.  If you have a younger child or a child who is non-verbal, it is a good idea to create an emergency contact card or bracelet that they carry at all times.  Make sure to list on the card/bracelet that the child is on the spectrum.

There was a time that Bass was out of control after being located by police.  The things he was saying and doing were really just him panicking.  If the police had not been educated, he would have found himself handcuffed and thrown in the back of a squad car.  He would have been institutionalized immediately.  Because our local police department has taken steps needed to educate their staff, they handled the situation with grace and dignity.  They were able to convince Bass that he needed to return home with us.  They were able to talk him down.  They allowed us to call our counselor in to visit with Bass (at midnight) in order to assure his safety, rather than bringing a strange social worker in from the County.  Because they knew us and the situation, they were able to determine that the statements he was making about what awful parents we are were unfounded.  We were able to get their support instead of their suspicion.  They were able to help us help Bass.

RECOVERY ~ It may take longer for kids on the spectrum to recover from a meltdown.  It can seem like forever to reach this point, and even when you get there, you’re walking on pins and needles trying to avoid a new flare-up.  It is so important for Bass to have time alone to recover.  He needs a moment to breathe, to allow his body to recover, his breathing to return to normal, his brain to relax, and for him to realize that he made it through the crisis.

The key is to listen to your child.  Allow them to tell you what they need at this point.  If they don’t want to be touched, don’t touch them.  If they want solitude, allow it.  If they want you to help them settle down, create a soothing routine.  Some of the things that have helped us when Bass was little and with Lulu is running our fingertip over their eyebrow, rubbing their back, reading, music, quiet time outside under a tree, swinging.  It takes some trial and error, but you are the expert on your child.  You will find the ‘thing’ that helps in this phase.  Trust your instincts.

POST CRISIS ~ Think about how you feel after a meltdown with your child.  You are drained, exhausted, relieved its over, feeling a little guilty for what some of your thoughts or reactions may have been, sad that you weren’t able to stop it.  Your child is likely feeling all of this and more.  They are tired, emotionally spent, physically depleted, and feeling a lot of uncertainty and remorse.  It is important to help them begin to replenish their physical energy with a snack and a cold drink. They will need reassurance that you still love them.

At the end of an episode, I always take a small snack and some milk or juice and just set it next to Bass.  I don’t even say anything to him.  I watch how much energy it takes for him to try to stay in control.  And when he’s not able to stay in control, his energy reserves are depleted!  I have found that in order to help him get back on track, replenishing his body is NECESSARY!

I have also found it necessary to reassure him.  The past few rages we have experienced, Bass’ outbursts are hurtful and filled with rage.  His vocabulary has become very ‘colorful’ during his rages.  This devastated me the first time I heard it, because that has NEVER been allowed in our house.  Even the word stupid is a big no-no.  But once the floodgate opened and he realized that those colorful words were a real expression of his anger, they seem to just spew forth.

However, when he is in post-crisis, he really beats himself up over what he has said.  He knows that the things he said aren’t true.  He knows that he would never use those words in daily life.  He knows that the things he says are very hurtful.  And he is so remorseful and disappointed in himself.  We take a moment to reflect on what he could have done or said differently.  We discuss that language and words hurt.  And then we close the topic by reassuring him that there is never anything that he can do or say that will make us stop loving him.  He still beats himself up for a day or two, but he realizes over time that we forgive him and that he needs to forgive himself.

This is a fairly new thing for him, and I am confident that just as we have guided him through the rules of physical violence, we will help him find more constructive ways of dealing with his anger.  I think the next tool we are going to add to our arsenal is that he can spew whatever made-up words he chooses, but he is NOT allowed to swear.  He’s a pretty creative kid, so I’m curious to see what kinds of words he comes up with.

It has helped me tremendously to consciously recognize the stages that Bass’ anger goes through, so that I can help him recognize and become more aware of them.  We have begun to replace some of the angry thoughts with more positive statements that he can repeat to himself.  We have given him tools to help him realize that these feelings are overwhelming, but they aren’t going to last forever.  And probably most importantly, I have stopped being afraid for long enough to take control of the situation so that he feels less out of control!

When you are soothing the angry beast, you can feel lost and alone.  Please know that you are not.  There are many parents out there who are learning right along with you.  Feel free to use the form attached here to begin a ‘Soothing My Angry Beast” book with your child.  Print out sheets as you need them, fill them out together, and create a binder for your child to review.  This can begin to give you both an insight into what some triggers may be, what body cues your child is recognizing as their anger builds, and some of the things that are working at helping them to soothe themselves.

Soothing Angry Beast