Autism Guide for a Happy Holiday

This time of year, with all of the holidays, is probably one of the toughest times of the year.  The frequent change in routine, small bouts of travel, spending hours at a time at other people's homes (even if it's a familiar home, like a grandparent's), change in diet, increase in sugary treats, large groups of people, loud crowds/music, can be overwhelming for Charlie.

So, for our family and friends, here's our holiday guide to Autism.

Charlie thrives on routine.  The hectic holiday schedule can get to be a bit much.  If we turn down an invitation to a party or a gathering, please don't take it personally.  It just means we've already over-extended ourselves.  We try and keep our schedule fairly low key during the holidays, but sometimes it can't be helped when we have as much family as we do.  Loud noises make him regress so don't be surprised if we need to go to a quiet part of the house to regroup.

If we're coming to your house for a gathering, be advised we will be calling you before we come to ensure Sunny is allowed to accompany us.  You see, Charlie has come to rely on Sunny every day for various things.  So when we ask if it's ok that Sunny comes along, we're talking about being in your house, being next to Charlie- not kept outside waiting or in the garage.  She does no good for him if she's not within reach.  And if you're not ok with that, that's fine, we understand.  Just know we may not be able to come, may not be able to stay long if we do come, or only a few members of our family will attend.  The part people don't see is the transition home after being at someone else's house for the afternoon or evening.  These transitions are earth shattering for Charlie and Sunny helps with those transitions immensely.

Charlie can be very tactile in his senses.  Meaning, he likes to use his hands and fingers to see things even though his eyes work just fine.  It's ok to ask him not to touch things that might be important or breakable.  It's also ok for you to put them away if that makes it easier.

Actually, all of Charlie's senses can be heightened, especially when he's in an unfamiliar place or already overwhelmed.  That means noises seem loud to him, lights are bright, smells are strong and food may be overpowering.  And speaking of eating.  Be aware it may make Charlie calmer to be able to get off his chair when he's eating and move around.  Don't worry, we won't let him eat somewhere in the house where food isn't allowed, but he may need to move around a bit and it may will take many prompts from Tyler and I for him to actually eat his food.  We've come to see that Charlie can focus on eating a little bit better when Sunny can lay on the floor next to his chair.  So please don't be offended if we position Sunny under the table during our holiday dinner. She's not there to sneak food off the table.  In fact, I can guarantee that she won't.  She's there for Charlie and only Charlie.

Transitions are hard (I feel like I've mentioned that before).  It's something that most people don't think about, but for Charlie it's really difficult to move from one big thing to the next.  Sometimes something as simple as moving from upstairs in our house to downstairs for a different activity can be tough.  So if it takes Charlie a little longer to join us for dessert, to play a game, or to get ready to leave, it's completely typical.  Just be patient please.

And sometimes we need to leave earlier than planned.  If this happens, don't ask if we're sure we need to leave or ask us to stay a little longer.  With autism, we don't measure time in hours or minutes like most people.  Instead we measure time in meltdowns, sensory overload and lack of routine.  It just means Charlie needs to get back to familiar.  We need to get back to routine.

Our family is wishing all of you a very happy Christmas/Holiday season!

Insight is Key...and so is Sunny

Insight is key when it comes to Charlie understanding what sets him off and what can help.  When there's insight, we can work to help him find ways to cope with what sets him off or triggers him.  Recently, Charlie told one of his skills workers during a session that stores and loud places are his weakness.  Aha!  Well, honestly, Tyler and I already knew this but for Charlie to recognize this on his own...and verbalize it, is huge.

Other things Charlie knows he has a hard time with include showers/baths, haircuts, car rides, winter coats (and hats and mittens, boots, etc).  And really, we try to help him walk through these things that are inevitable and are just part of life, but sometimes there's no easy way around it.  For example, everyone needs to bathe.  There's no way around that.  So we try to have certain washcloths, soap, towels available for him to use that make it easier.  Unfortunately bathing is something Sunny really can't help with.

Hair cuts...we try to do this as minimal as possible since it is so terrible for him.  We've tried so many different ways to do this without making him miserable and there hasn't been anything that does the trick. And right now we're on the verge of pushing it too far.  It's gotten to the point his hair is so long that he refuses to comb it (trust me, this kid has some crazy hair), but then he refuses to cut is as well.  Tyler and I usually just buzz it at home, but wish us luck, this week we're going to attempt taking him somewhere for someone else to cut it.

Lately Charlie has had a really difficult time when I leave the house for any period of time.  He's always had a hard time with this, but he can usually handle mom being gone for a couple hours and keep it together.  Right now that's not the case.  We always prep him if we know I'll be gone for a little while.  Usually TONS of prepping happens when we know I'll be gone on a business trip for a week or so.  But right now, any amount of prepping is not helping.  On Friday I was gone for a meeting for exactly 1 hour.  And this is part of what I came home to.

Yep, that's two huge baskets of clean and folded laundry just totally upended and thrown around.  Besides that we have a couple new holes in our walls and a child who cannot be calmed.  It took some time, but with the help from our amazing essential oils and his girl Sunny, we made some headway and eventually calmed down.

So, now to find some new tactics to get Charlie to feel comfortable so mama doesn't feel captive in her own home!  Charlie's workers will start helping him find ways to cope when he's out in the community as well.  Sunny has already made some great strides in that area, but eager to help him learn some new skills that can hopefully make going out a little more bearable.  Sunny has made it possible for us to be able to go out to eat at restaurants- granted, we don't do it a lot, but we can do it with her help!

Verbal Doesn't Equal Communication

Most people think that if a person is verbal, they have no communication issues.  That couldn't be farther from the truth.  Our son Charlie is verbal.  He can carry on a conversation with you, he can tell you what he needs/wants (sometimes), he can tell you what he sees, hears, smells, etc. But many times he has a difficult time forming his thoughts into words- especially when he's overwhelmed, frustrated or upset.

Charlie using Sunny to stay calm, distracted and grounded.

There have been times when Charlie is telling a story and ends up repeating a word over and over because he can't seem to get the next word out or form his thoughts enough to get the remainder of the story to come out.  Many times he'll give up, which makes Tyler and I sad to see.  Other times he'll be able to remain calm and tell us that he'll try again when he remembers what he's talking about.

Today Charlie was trying to tell me he wanted to watch a movie.  He had a specific movie in mind, but couldn't tell me which movie he was talking about.  It didn't help that he didn't remember the name of the movie.  So when he tried to explain what happened in the movie- and couldn't do that successfully- he got upset and frustrated and gave up.  When I tried to help him through his thoughts- who were the people in the movie?  Were there any animals in the movie? Was it a cartoon movie or a real people movie? He couldn't give me any answers.  I could tell his mind was spinning- he just couldn't get it all into words.  It takes an enormous amount of patience to help him get through these moments, and I'll admit some days it takes a large amount of energy to show up with that patience.  I simply waited for him to be ready.  I told him that I'd be ready to listen whenever he was ready to try explaining again.  I'm not joking when I say I waited over a half an hour for him to try again.  But when he came back to me he had all his words ready and was able to explain what movie he was looking for.

Luckily Charlie was able to stay calm while gathering his thoughts- coloring inside a box.

We've come to rely on Charlie's non-verbal communication as cues to how he's feeling when he can't adequately describe what's going on.  We know cues like his body getting tense, a certain moaning sound he makes over and over when he's upset, when he gets quiet and won't make eye contact with us, when he can't follow direction or certain tasks.  Some days it's a guessing game.