The Anatomy of a Meltdown

For those of you unfamiliar with the ASD (autism spectrum disorder) community, a meltdown may look like an epic tantrum to you.  Having lived with Jacob as long as I have, I've become somewhat skilled at picking up the clues we are headed to a meltdown.  I wish I were better at preventing them all together; but that's the thing about a meltdown:  they can't always be prevented.

Meltdowns are usually caused by a stimuli Jacob can't process or handle correctly.  I've seen meltdowns ranging from the echoing sounds of a cafeteria to the smoky air outdoors during scheduled burns.  We've had meltdowns from uncomfortable clothing, tiredness, hunger and even unfamiliar surroundings.  Something as simple as someone looking at him in a way that makes him uncomfortable can cause a total loss of control for Jacob.  While this may seem silly, and trust me, many people have recommended better discipline would solve my problem, for Jacob, these all represent things he doesn't understand how to handle.  The therapists described it to me best as when you're incredibly hungry.  When you're so hungry your head hurts, your vision starts to blur and everything everyone does pisses you off.  Someone simply tapping their foot under a table can be the straw that breaks the camel's back.  We as adults often react in these situations with anger, blowing up and then later having to apologize for our outbursts.  For Jacob, his senses can be so heightened, he finds himself in these same overwhelming conditions more often than usual.  His senses can even be so heightened that his brain interprets these stimuli as painful rather than simply irritating.

Jacob's typical meltdown follows a mostly predictable pattern.  This pattern I've discerned over YEARS of watching meltdowns occur and looking for the early warning signs.  First, he begins what seems like a pointless, repetitive action. Sometimes, this is the stomping of his foot.  Sometimes he'll begin clicking his tongue. I'm not sure if it's the spidey sense of a spectrum mom, but I've also noticed this action is usually accompanied by the twitching of his head, slightly.  From there, the reaction snowballs into self harm for Jacob.  Not all children on the spectrum have meltdowns that culminate in self harm, but many do.  For Jacob, this is usually slamming his head.  When he was only 18 months he broke open his eye socket and broke four of his teeth. Since then, we've gotten better at finding soft places for him to slam his head.  Unfortunately for me, that soft place is usually my chest.   I hold him as tightly as I can and he buries his face either in my chest or if we have access to one, a blanket to shut out sound and light.  He bashes his head against my chest as I rock him tightly and this helps settle him faster.  When this method doesn't work, all we can do is simply put him in a soft place and let him smash his head until he wears himself out or works it out.

Those meltdowns when I have to simply put him in a soft chair or sofa are the hardest for me.  Even though it's painful when he slams his head against my chest, holding him and rocking him gives me the feeling I'm helping- that there's something I can do about it all.  The knowledge I have no control over it is the worst part of all.  As a mother, seeing your child hurting- and as a result willing to hurt themselves and being able to do NOTHING to help is gut wrenching.  During a meltdown, all Jacob's senses are incredibly heightened.  You can't speak, it hurts his ears.  You can't rub his back or legs, it hurts him.  Only when he's calm can he be comforted.  That's one of the ways you can tell a meltdown from a tantrum.  A meltdown isn't fueled by his desire to get something out of me or even to get my attention.  Many times, there's nothing he wants except quiet and calm.

At the same time, I can't imagine what it's like to be Jacob.  When I'm feeling overwhelmed and out of control, I seek the comfort of others.  A hug or conversation can bring me from the brink to peace.  Jacob can't stand any of these during a meltdown.  I can't imagine being physically hurt by the touch of my mother as I felt my lowest.  The emotions of watching a true meltdown and knowing only he can help himself are enough to move me to tears.  I cry almost every time.

He's gotten much better at learning to identify when he's feeling overwhelmed and trying to reduce the stimuli himself.  That's one of the things therapists try to teach him.  He uses accessibility equipment at school so he can be integrated in a regular classroom, but decrease the likelihood of a meltdown.  He has noise canceling headphones that reduce the sound when he's overwhelmed.  A local church recently gifted us with a pair that has volume control which is amazing!  We have to pay out of pocket for any equipment he needs, so I know how expensive all therapy equipment is.  The volume control really made Jacob feel more in the loop, so we're so thankful.  He also uses a weighted lap pad at school and a weighted blanket at night.  The weight puts pressure on his muscles that helps calm him and give him more control.

Overall, Jacob's meltdowns are fewer and further between as he attends more and more therapy.  He learns to self soothe in a variety of stimming activities that help reduce his overall sensory overload. Any repetitive action that can seem odd for a spectrum kid is considered stimming.  For Jacob, his usuals include running in circuits (one of the reasons he's so great at track!), hitting himself in the head with his fists (this one we're trying to stop), chewing the neckline of his shirt, and waving his head around with what we call his silly expression (mouth open, eyes comically wide).  Sometimes, Jacob uses a made up language or regresses to a series of grunts and sounds to communicate, rather than use words.  This one surprises most people given his talented grasp of the English language.   All kids are different though.  Some children are ecolalic (repeating the same word and phrase), some shriek, and some are more physical even than Jacob.

While this has been a long post, I hope for a few of you, it helps you understand what's behind an autistic child's meltdowns.  Honestly, one of the most upsetting parts of it for me is that people mistake it for a tantrum or misbehavior.  Even parents and teachers we've interacted with, who know about Jacob's condition, have told me I should discipline better or teach him that's not acceptable behaviors.  While I understand from the outside, it can be hard to tell the difference; I can.  Jacob is genuinely one of the sweetest, well behaved children I know. I don't just say that as his mother; I can provide character witnesses.  He's not perfect, and I've learned to differentiate, disciplining when needed.   What I need from my friends and family, is not to question my parenting.  I do enough doubting of myself.  Strangers especially judge. Sometimes they stare, sometimes they speak.  Even the children in Jacob's class, who love him almost as much as I do, have asked me why he's so weird.  They've asked me why he hits himself or screams when they try to touch him.  I know they are asking out of genuine concern and age appropriate inquisition.  But it still hurts my heart.  Jacob either doesn't notice or doesn't care he's different, but as a mom, you always want your child to have an easy life of fitting in and being liked.  If nothing else, I hope you understand a little more what it's like to be the parent of a spectrum child and how exhausting it can be.  I hope you understand a little more what it's like to be Jacob.  Ultimately, this is the story of his road, his journey.  We're simply along for the ride.

Regression- A Really ROUGH couple of weeks

This week has been a rough week.  It has been emotionally, physically, and mentally exhausting.  Jacob has regressed pretty severely in his progress over the last couple weeks leading to more melt downs, lots of stimming behaviors and even some self harming behaviors.  One of the most difficult parts of a regression in a child with autism is knowing as a parent, there's nothing you can do.  All you can really do is be patient.

The reasons for Jacob's regression are personal, but lately we've experienced a perfect storm of issues- all of which could make a child with autism have outbursts and meltdowns- but together are impacting not only our whole family, but his classroom and those he interacts with daily. This entry I hope will explain what is happening with our family this week and honestly, give me a chance to vent.

I'm so exhausted, I'm having trouble even putting this all into words. I have a desire to be eloquent, but lack the mental capacity for it! So bear with me.  In the past, when Jacob would have a melt down he would frequently resort to self harm.  He slaps himself, bashes his head into walls or door frames, or has thrown his body into walls and other hard surfaces.  Among spectrum children, this is common as it provides a sensory input that in some cases can help calm them.  As a mother, it's particularly scary to see your child engage in these behaviors.  Because of Jacob's sensory integration dysfunction, he also doesn't feel pain like you or I would, so this is more than scary, it's dangerous.  Today, he had a meltdown at school so severe, they asked me to take him home. That's never happened before.

I find myself calling my mother in law, Marcia, almost daily this week.  She has a phD in special education administration, as well as being the mother of a spectrum child as well.  I have had to call her daily to ask if I'm making the right decisions; what can I do different to help him; what should I be doing?  Even beyond advice, I call because I know she will always understand how I feel.

Since it's February, kindergarteners are learning about love.  Jacob had an assignment where he had to write a few sentences about a time he felt loved and read them to the class.  When it was Jacob's turn, his paper was empty.  "I've never felt loved." was his response.  Anyone who knows me knows this child is BEYOND loved.  But for Jacob, love is a fact. I love my mom, my mom loves me.  He literally doesn't understand FEELINGS.  They have to be explained to him.  This lead to the class laughing (they thought he was being silly) and giving him examples to use, "when your mom tucks you in at night!  when your mom kisses you!  when your mom makes your favorite meal"  Jacob just started screaming and put on his noise canceling headphones. For him, those are things moms do. How is that a feeling of love?  His teacher had to give him time to settle and then sat him down and explained feeling love is feeling happy when someone you love does something for you that makes you happy.  After that, Jacob was fine!  He wrote about when we make picnic baskets and eat in the grass on Tuesdays!  But let me say, as a mom, having a teacher tell you your son told an entire class he's never felt loved....it broke my heart in two.

This week has been filled with head banging, crying (from both of us) and lots of stress.  But I try to remind myself how lucky I am. This is a period of regression.  Jacob will eventually work through what's bothering him and get back on track, progressing towards more socially acceptable behaviors.  SO many mothers live their day to day lives like this.  I know some mothers of autistic children who have it far worse than we do even in this regression period.  That doesn't make it easy for us now, but it's a good perspective.  I also like to remind myself that Jacob is so loved that even in a school where he's having issues, children rally around him and protect him. When he had an episode on the track today, literally dozens of children surrounded him trying to console him and make him stop hurting himself.  They encircled him telling him how much they love him and want him to be happy. And although that tends to make his meltdowns worse, it really illustrates to me how accepted and loved he is.

Amongst this difficult week, there is silver lining in the clouds.  He is an exceptional child who is loved by so many more than just me.  If it takes a village to raise a child, I know I'm not alone. Thank you to all of you who have been understanding this week.  I've been stressed, angry and sad.  But as I support him, you support me.  And I appreciate it more than you can imagine.

Beginning the Adventure of a Lifetime

My son, Jacob, is one of the most extraordinary people you will ever meet.  He's brilliant, he's handsome, and he's autistic.  Not one of these attributes define him, yet they all combine making him who he is.  I started this blog as a way to explain some of our life to others and honestly, to give myself an outlet.

Jacob is a very high functioning spectrum child. For those of you who aren't familiar, autism is a spectrum disorder. This means there's no blood test, no confirmation and even two different doctors can sometimes disagree on diagnosis. But, there is a set of accepted characteristics those on the spectrum display.  The difficulty comes in measuring where a child falls on the spectrum.  I too have autistic characteristics. But because these features of my personality don't negatively impact my life, and I'm capable of controlling them, I wouldn't fall on the spectrum of autism.  Meanwhile, children are assigned the diagnosis if their characteristics are severe enough they have difficulty functioning in normal settings.  This means a child can be non-verbal and have the same diagnosis as a child who has difficulty socializing or making eye contact.

All parents will tell you early intervention is key.  We say this because it is drilled into our heads from the moment we hear the words, "we believe your child has autism."  As a parent, you are then informed of the myriad of therapies that would help your child cope with the symptoms of the disorder they display.  Our first clue Jacob had a problem was when he was 18 months old.  He had been getting more and more aggressive with tantrums.  He started banging his head when something didn't go his way or bothered him.  NOTHING would soothe him.  My mom told me to let him bang his head, he'd tire of it and realize it hurt. With nothing else working, I followed my mom's advice.  That night Jacob ended up in the emergency room with a broken open eye socket and chipped teeth.  He literally beat his head so hard against a wall he broke his own teeth.  We went through six nannies in 3 weeks; one recommended we have him seen by a priest.  I'm ashamed to say it took another year before I started listening to those around me who suggested there may be a bigger problem than a temper.  I'll never forget the day I accepted it.

When the words came out the doctor's mouth: autism spectrum disorder, I cried. I'm sure any mom can understand.  You have these big dream for your children and those words make you question everything.  For those of you out there who have children on the spectrum or suspect, cry your tears, but know this: this is not a death sentence.  The doctors are right.  Early intervention IS key.  Jacob is now so high functioning, many would never guess he is on the spectrum until he has an issue.  Most describe him as a little "off", but would never guess what we've gone through and what we've seen.

We've worked hard to get Jacob to the point he is.  He is integrated into a normal kindergarten.  He works side by side with his peers with some small accommodations made by his teacher.  His language skill is one of the most advanced his teacher has ever seen, with an incredibly extensive vocabulary, although his speech skill needs some work as his brain moves faster than his lips can.  His brain works in ways that still amaze me.  He asks questions as an adult I've never thought to ask.  We are lucky.  Most spectrum children see the world in ways our minds can't configure.  Jacob is verbal enough to let me catch a glimpse of that.

My plan is through this blog to share our lives with you.  There's only one thing I ask in return. If you read or follow this blog, please only leave positive feedback and comments.  The reality is sometimes, people are unkind without meaning to be.  Parenting a special needs child is hard.  It's exhausting and sometimes, it's heartbreaking.  While Jacob is high functioning and you may know children with more severe cases, that doesn't make our journey any less significant or sometimes difficult.  The last thing a special needs parent needs is to be told they should have handled something differently or the worst, "that's no big deal".  What I need from you: friends, readers, family, is to simply support us.  There's no answer for exactly how to handle any situation. I do the best I can day by day and HOPE I'm making the right decision.  Sharing our life in its entirety will be hard. I tend to focus on what's funny and lighthearted about his disorder.  BUT, I'm trusting, by seeing the big picture of our journey, it will help me cope at the same time I hope educate others on what it's like to parent a spectrum child.

Here's to our adventure!

#aspergersgradek