I Love Someone with Autism

I have seen this badge a lot out there on Autism sites. I have told people before that it sometimes annoys me and they don’t understand. I guess a lot of that is because I know what it takes to really love someone with Autism. It makes me think of the quote that says “Love is a commitment not a feeling”. That quote is true in all relationships, but I think it is even more true with an Autistic person.

Anyone that knows Quay is overwhelmed by his charm and his flirtatious nature. They love the smiles that you can get and how if you catch him in the right mood he can be a very loving boy. When I hear someone say I just love him and his laugh, I smile but I know what that laugh means 99% of the time for me. I mean do they really understand that his uncontrollable laughing is a symptom and that this laughter has caused me to physically pick him up and carry him out of the store because that laughing has made him unable to walk. Do they get his flirting to get you to rub his leg or arm is a self stimulating behavior? Do they get that real love in my eyes means showing him how to cope with his behaviors and reactions by himself? You see I can be charmed by him too, but I know that he will not stay a cute a little boy forever. My Quay is going to grow up to be a very handsome young man. I also know that the behaviors that may be socially acceptable and cute now, will not be when he is 25 or 35.

I am thankful every day that I have the privilege of being the “mother” (I will explain in the next blog why I put that in quotations) of a severely autistic boy who is also severely mentally challenged and is hitting puberty All of his conditions combining right now means we have a lot more bad than good. On a daily basis I get to love a person with autism when he decides to destroy his new toys and shove them down the vent and laugh about it. I get to love him when he starts to cry or scream in public or at a restaurant and you have people stare. I even got to love him a couple of weeks ago when he decided it would be hysterical to have a bowel movement in the middle of his bedroom floor and not only smear it all over him but also on the carpets and the walls and his toys. I know that there are people all over the spectrum and some deal with worse than me and some are thankful reading this as it put their struggles into a different perspective.

I completely get that raising awareness means helping research, funding and allowing people who have no one in their lives on the spectrum to get a glimpse into the life of an autistic person. I also completely understand that what Quay must go through in his head on a daily basis and is unable to communicate to anyone is 100,000,000 times worse than anything I can do to care for him. That is why I try to learn as much as I can to help him. I just think it would help caregivers like me (which I know I am a fortunate one as I have a partner and respite) to see just as many that say “I love a caregiver of someone who has Autism”. So for all of you reading that go through it, one day at a time, day after day: I admire caregivers of autistic people.

If you have recently had a diagnosis of Autism or if you are just becoming aware of the spectrum and would like more information or resources, please check out our website at www.autismlifelink.com.

Autism Life Link Through My Eyes

“Let’s start a company to fill the needs of autistic people.”  That is how it all started.    He went to a conference and
came back with an idea that he wanted to do more…we wanted to be more…he had a bigger vision.   He wanted to provide things for people like Quay that are not readily available to the autistic community.   Sounds like a noble and great idea doesn’t it?   I should be honored and thrilled and ready to put all my other things aside to jump in with both feet, right?

Not sure how many of you are mothers out there that just read that and got a chuckle.   Also not sure how many of you are parents of a child on the spectrum or with some other challenge that literally laughed out loud.   I am sure anyone out there that works or owns a house or has child(ren) or a demanding job and is like me and has to fight just to have a hot cup of coffee once in a blue moon, can understand how I did not leap out of my chair and jump for joy at the thought of starting a new chapter.

Change is hard.   Getting out of a routine and a comfort zone is hard.  It doesn’t matter if it is personal, at work, with a family, or with a life time goal.   The thought of taking a well oiled machine and adding a whole new set of gears is daunting.  That is why most people don’t do it.   I knew that for my husband the visionary, that was not an option though.  Change was coming and I had to figure out how the family was going to adapt.

He has pushed me for a couple of weeks to get involved.   “Be a part of this” he would say.   “I know you have a lot of great ideas and can contrimageibute” he would add.   I was trying to figure out how to add those other cogs and try to remain a positive person.  You see, my morning starts every day with getting Quay up.  He is my severely Autistic step son, who has also been diagnosed as Intellectually Challenged and a Type 1 Diabetic.   One or all of those conditions means that every night he wets the bed…which really is more accurately described as saturates his bedding.     Just before his 11th birthday in February he decided he would be potty trained during the day.   It was such a huge victory and cut my laundry down by half, that I don’t grumble near as much about the daily load of bedding that I have to do every morning.  I know that it is a challenge that is out of his control and will probably always be a part of his life.   He gets up and in the tub and I guide him to get clean.   This, like every other daily activity that most take for granted, is something that he must either be assisted or guided to complete.  After his bath I am currently helping him “learn” to dry off.  Once we are dry and have been potty, we check his morning sugar reading and he puts on the clothes that I set out the night before.  You see he can’t make clothing choices for himself.  If left to his own devices I am sure he would not bathe or dress at all.  I lay his clothes out because they are locked in his closet.  Yes, I have his clothes under lock and key because you see picking them all out of the floor or rewashing his entire wardrobe is one battle that I have stopped fighting.  We have to work on more important things before I will tackle that bear again.   I am thankful we are to the point that he  is able to get dressed for the most part by himself, minus a backwards shirt or pant legs tucked into his socks, and it is off to the kitchen.  That gives me a chance to wake up his sister and head to the kitchen myself.  Once in the kitchen he gets his morning shot and his ritual breakfast of cheese, pepperoni, a granola bar and water.  You see we have to start the morning off the same way in hopes of controlling his sugar readings.  After that it is teeth brushed, vitamin, shoes on and out the door to school.    Not too bad for the first hour or so of a day right?   Well did I mention that he might be silly and not want to listen?  Or maybe he says he has to potty and goes for the 20th time and does nothing?  Or maybe he feels like yelling or slamming his hands on the table or stamping?  But wait there is the dog and the 4 year old little girl and it sure would be nice to get myself ready and out the door.  Not so bad just got more “Ugh” huh?

If you are still reading you probably think I am a big complainer.  That I should be thankful for all of my blessings and the ability I have been given to care for my family and my special needs child.  Anyone that really knows, will actually be surprised to read this from me.   I do not share the trials and tribulations of my life.  I am very thankful that God put me in the path of my husband and in turn decided I was the right person to step in and be the second mother of this wonderful little boy.  But you see, the contribution that I decided that this company needed was a bit of truth.   The piece that is often missing is the hard stuff.   You know how you like to go and talk one on one with another married woman, especially one with kids?   Because they can tell you a story of something that they are currently being challenged with and you both can laugh and not feel so alone.  Everyone has issues.  Everyone has challenges. Everyone has to deal with the hurdles.   But when we don’t talk about them and keep moving forward, it gets lonely.  Just to hear that someone else gets sad or frustrated or angry makes you be able to step back and laugh, regroup and push forward.   So that is how I am going to support Autism Life Link.  I am going to be the voice that opens up the tough conversations about how hard it is to do what we have to do for these special people day in and day out.  I want to provide a place for others to share their stories and grow a community where you can feel safe to say the hard stuff, to vent and more importantly share the victories that only people that really have to care for an autistic person can celebrate.  So I hope you will join me every week as I share my struggles and victories and I hope you will comment and share yours too.   Join me in Coping with The Missing Piece:  My Story of Dealing with Autism.