Conversations We Never Thought We'd Have

As parents, we all have a vision in our head of what parenthood would look like before we have kids, right? When your kids are babies you imagine all the things you'll do together as they grow up, all the conversations you'll have, all the adventures ahead.  You think of the sports they might like or the friends they'll have.  Of course there will be curveballs thrown in along the way.  But one thing we didn't see coming; autism.  And one conversation I never envisioned my husband and I having was of our son's self harm.  

Charlie was diagnosed with autism at age 4.  He and his twin brother, Christian, turn 9 in 17 days.  We've lived the last 9 years in a life we never envisioned.  A good life, but sometimes hard too.  And one place we never saw ourselves, was at our kitchen table talking with Charlie's lead therapist about\ his self harm and how to keep him safe in our home.  That's where we found ourselves this morning anyway.  

Self harm is a hard one to talk about.  No one wants to witness their child hurting themselves.  And talking about it almost seems taboo.  Almost like there's a stigma behind it, such a delicate topic.  It's heartbreaking.  It takes a lot out of us as parents and it takes a lot out of Charlie too.  

Self harm isn't new to us.  Charlie has banged his head from an early age, so hard in fact, to the point of putting holes in the wall.  It was actually one of the early warning signs that alerted us that something was going on.  It got better for awhile there, but recently it's been resurfacing.  And this week it's been a kick in the gut.  But now instead of the tiny boy that we could once scoop up, we have a grown boy.  One we can't so easily scoop up and redirect.  And today's conversation revolved around how to keep him safe right now.  Ideas like padding certain items around the house, modifying his bedroom to make it safer/less destructible.  Thing we definitely need to take into consideration.  

The last year has been such a rollercoaster with such huge changes that none of this should surprise Tyler and I.  It's one way Charlie copes with stress and anger.  Yes, an unhealthy coping skill, one we'll need to spend time working on again like we did in the past.  And we'll add that to the list of other things to work on that we've lost this year.  Things like being socially appropriate; or being social in general, tolerating going out in the community, participating in activities outside of the house, riding safely in the vehicle, building tolerance to riding in the vehicle longer than 20 minutes, eating in a restaurant...the list goes on and on.  But believe me when I say we will claw our way back to where we once were.

The Special Needs Hole

 There is a graphic online that I've seen several times that accurately reflects the life of a special needs parent.  

Let me be clear, I can't speak for all special needs parents, but I think a lot of people can agree with this graphic.  As a special needs parent it's easy to fall into the special needs "hole."  Or as we call it in our house, the autism hole.  I'll admit I fall into this hole more often than I'd like.    

If you're not familiar with the special needs hole or the autism hole, let me tell you about it.  The autism hole is sitting in the unknown- unknown what the future holds for your child- will they walk, will they talk, will they be able to shower independently some day, will they eventually be able to dress themselves without help, will they be able to drive, have a job or live independently as an adult?  So many unknowns in the autism hole.  

When you're in the autism hole it's constant anxiety about behaviors, eating habits (or lack thereof), sleeping habits (or again, lack thereof), social skills, whether to medicate or not, aggression, medical concerns, comparisons to other kids, the meltdowns or which therapies will be best and how to juggle that darn schedule.  

The autism hole sucks you in and makes it hard to see the light.  This hole makes it hard to look past where your child currently is rather than celebrate and marvel at how far they've come.  The autism hole covers you with the hard and the stress.  This hole makes you believe you'll sit in there forever and never be able to crawl out.  

As a special needs parent, this hole is inevitable. 

It's ok to sit in that hole once in awhile.  Every parent does.  But don't stay there long.  Even I need to remember that advice from time to time.  

Remember there are people who are willing to help you crawl out, those who have been in that same hole and can help you to see the light. Take hold of their hand and don't let go.  And maybe some day you can be the one to extend your hand to someone else who is in that hole.  

Together We Can

It's evident that together, Charlie and Sunny can do so much together.  Sunny gives Charlie this confidence that grows each day.  A confidence we haven't always seen in him.  She gives him strength even though he tells me he's scared or nervous.  He doesn't tell me with his words because sometimes those feelings are hard for him to formulate from thoughts to words.  He tells me through his behaviors and body language. 

Yesterday was the dentist.  

When we go to the dentist I'm sure we look like a three ring circus- 1 mom wrangling 3 wild boys and a dog.  We're quite the site!

Up until a year ago at age 8 Charlie couldn't have his teeth cleaned at the dentist.  Well, he could, he just wouldn't.  The dentist has always been hard and scary for him.  It's a sensory nightmare; the bright lights, the weird sounds, the strong smells, the gross taste and feeling of things they put in your mouth.  Until last year, he couldn't make it through a dentist appointment without running down the hall away from the hygienist.  We couldn't get him to sit in the dental chair, let alone step foot in the room.  We tried.  Every six months we would try and try again.  

Enter Sunny.

We knew when we got Sunny that she would help Charlie through things that are difficult for him to do.  Every day things that you and I take for granted such as waking up and getting dressed in the morning, transitioning from the house to the car, going to the grocery store, walking safely in a parking lot.  Or yesterday it was going to the dentist.  

Leading up to the dentist was a lot of anxiety.  I knew Charlie was nervous about going.  He always is.  But we talk through it.  I remind him how amazing he is, that mom will be right next to him the whole time.  I remind him how nice his dentist is and that Sunny can be in the chair with him.  I told him we'd go out for lunch afterwards.  

Then it was Charlie's turn.  He marched right into the room where they'd clean his teeth.  He hesitated slightly to sit down, but he eventually did.  He asked for Sunny to lay on him while the hygienist finished prepping her materials.  Sunny didn't hesitate and did her job as we asked.  She stayed her lap command beautifully the whole time Charlie was in the chair.  

You see, for Charlie, the deep pressure of Sunny laying on him keeps him calm.  It helps his body to feel grounded and secure.  Deep pressure therapy is one of the most common ways Sunny helps Charlie every day.  

Yes, together Charlie and Sunny can conquer anything.  

Yesterday they conquered the dentist.  

The Beast of Anxiety

Can we talk about anxiety for a minute?  Anxiety is woven into our every day in our family.  Even the slightest of things can bring on anxiety for Charlie.  A few days ago I started prepping him for his upcoming dentist appointment.  We know things like this bring on a lot of anxiety for him.  It's a fine balance between prepping him for it- which works better- or springing it on him like a surprise.  If we avoid talking about it and spring it on him last minute, the outcome is usually a disaster.  So we've learned to prep him for most things like dental or doctor appointments or even just an outing in the community.  By talking about what we're doing and telling him what to expect, we can prep him for what is coming.  However, even the prepping can bring on a lot of anxiety.  

Since the moment I told him he has a dentist appointment on Monday, Charlie talks about it throughout the day.  He asks multiple times a day when the appointment is and if he needs to get shots (he mixes the dentist up with the doctor).  I will then tell him how many days until we go to the dentist, we write it on a calendar and I remind him how nice his dentist is.  I also remind him that Sunny will be there with him and can sit in the chair with him if it is helpful- yes, we've had Sunny in the dental chair with Charlie multiple times before and it always helps him get through the appointment like a champ.

Anxiety can look so different from person to person.  For Charlie it's a hyper focus on what he's anxious about, it's constant worry and thinking about it, its clinging to mom and needing extra snuggles, it's not being able to focus on eating or even coming to the table for a meal at all.  His anxiety is finding something insignificant and making it a way bigger deal than it needs to be, it's crying and increased meltdowns, it's items being thrown and often broken.  And sometimes it's aggression.  Anxiety is a best. Anxiety present itself in so many ways for him and some of them are really hard to deal with.  But we'll keep prepping and we'll keep working on ways to stay calm tomorrow for the big appointment.  Cross your fingers for no cavities.  Brushing teeth is a whole other beast over here.