Wednesday, December 16, 2009

[I’m not sorry.]



I was told recently that I can be selfish because I act as if I don't realize there is anyone but Brian and I. That I act as if we are in our own little world.


My. Child. Has. Autism.

I don't think this is something I'm going to apologize for.


Let's look at my life.

Every interaction I have with my child takes ten times longer than a normal interaction because I need to wait for him to actually look at me. I need to repeat the question up to fifteen times before I get a correct answer and not just a repetition of whatever I have asked.

Having a child like Brian adds tons of extra housework. Every day I'm cleaning up some kind of mess I probably wouldn't have if my five-year-old didn't have autism. I have to clean up poop smeared on the bathroom wall, a flooded bathroom floor, or chewed-up, spit-out crayons in the corner of the playroom. Brian generally gets a bath at least twice a day, depending on what kind of mischief he has decided to get into.

My dishes are usually doubled, because I work hard to follow a special diet for my child. Most meals are made from scratch and I sometimes have to make double dishes because not everyone in my family is a gluten-free/casein-free/phenol-limited fan. I also have to make homemade bread at least once a week. If Brian's teacher is planning a "cooking" activity, I need to make sure I have a similar substitution so Brian can participate.

I can't go and do the things I'd like to do because Brian doesn't have the attention span to attend. Things like basketball games, plays, going to the museum, or a movie theater. Not that we don't attempt those things but I generally have to leave early and walk around in the lobby or outside surroundings to let Brian get movement and have no noise restrictions. It's not fun for me and it's not a wonder that I sometimes just opt out of those things and stay home with Brian.

Any new situation requires planning. We can't just jump into things, even things as simple as adding snow pants to our outside apparel. That requires me making social stories or picture schedules, using those implementations, waiting out tantrums, and practice, practice, practice.

My day requires dealing with at least one tantrum every day. It requires doing oral-motor exercises every day. Sitting through the same movie day after day. Learning how to block out that high-pitched happy squeal that accompanies Brian wherever he goes. Searching the entire playroom for the correct caboose that goes with that certain engine. Sitting at a table with a very unwilling child to work on letters, numbers, colors, shapes, and whatever else we need to work on, because school and the normal learning through play method doesn't work for him. It requires learning different joint-compression, musgatova methods, and brain gym so I can help him calm his body when needed. I have to learn about adaptive equipment and choose what is the best for him. I've had to learn a whole new way of thinking and a whole new vocabulary just to keep up with the specialists in the field. On a regular basis, I have to find new ways to trick my child into taking vitamins and supplements that I am giving a try to see if they help my baby. I have binders I keep that are four-six inches thick of not only every single evaluation and progress note Brian has ever had but every research paper that I have found that I find some truth in.

Almost every day Brian breaks out in some new kind of rash or his bowel movements change color or consistency. Fun, right? That leads to me needing to figure out what he ate new or was in contact with that caused a reaction. It leads to me having to do a little bit more research and maybe tweaking his diet one more time.

Brian doesn't sleep through the night. I am sometimes up with him three-five different times a night. I often feel like I haven't slept in the seven years I've been a Mom. I'm exhausted.

My schedule has so many added things to it that "typical" parents don't have. Speech appointments, occupational therapy appointments, naturopaths, chiropractors, therapeutic horseback riding, evaluations, case management meetings and pediatricians appointments, sedated dentistry appointments, allergy testing, eye check-ups, hearing evaluations, and lab visits. I have to stay at the school for an extra hour or two at least once a week to answer any questions they have about Brian and to show them the appropriate way to approach some issues, because I am the only one that knows him that well.

I have twenty-four hours a day, just like every other person. I go to school full-time. I have another child that I certainly do not ignore! Is there any wonder that I don't have any extra time? I wonder if ANY Mom, let alone a Mom with a child with special-needs, ever thinks they have enough time to give to everyone.

None of that even includes the emotional part of being a mother to a child with autism.

You don't understand the feelings involved of having a child developing typically, saying words, interacting, so happy all the time suddenly regress to a child who didn't even notice when you came home from work. Unless you've lived it you can't understand the importance of waiting for your child to call you "Mama" and having to wait until he was four years old to do so. You don't have to ignore the stares or have to educate complete strangers why your child, who looks like a big boy, just threw a toddler-sized tantrum in the middle of the grocery store. Or how just the simple touch of his hand to your cheek to show his affection can make your heart jump in your chest.

I do all these things with determination and hope that I am somehow shaping a better life for my child. I have spent so much time these past three years of diagnosis with tears in my eyes. Do you understand that these things are not an option for me? Do you understand that there is no choice in my mind? If there is ANYTHING I can do to help him grow and to perhaps secure the fact that he'll be able to hold down a job, even if it is bagging groceries, I will do it. Everything I do revolves around helping my child reach the quality of life that every individual has a right to. There are plenty of days that I question everything I do, especially when I haven't seen the progress that I want to see, but hope and love keeps me going.

Would I consider what I do, selfish? Never. I have given everything I have to my two boys and I don't regret a second of it. The only thing I'm going to say sorry to is that you don't understand why I do this.


{P.S. I have written over 1200 words in this blog and I know other Moms in my position would agree that I really only touched on the tip of the iceberg in all that we do!}


Unknown said...

Screw 'em. That's why I'm a hermit. :) It IS about your family when you have a child with autism...

Christina said...

I won't even pretend to emphasize, because I am not in your shoes and I am sure I have no idea. But I have kept up with you for a long time and I have seen your joys and your struggles. I am honored to be allowed this little window in your life, and I have told you before how much of an inspiration you are to me. I wish I could give you a big hug!

Unknown said...

I agree with Crystal, wholeheartedly. There are enough of us that understand ... the rest of the world may never. You have to take care of yourself and your children, the rest is not your problem.

Much love,

Unknown said...

Well said. Cut me to the quick to read it because I unfortunately understand.

Crystal said...

Screw 'em. That's why I'm a hermit. :) It IS about your family when you have a child with autism...

Tessa J. said...

This hit me hard. You're exactly right, and whoever told you that you were selfish....well, I won't go THERE!

Paula (QWERTY Mum) said...

What an amazing woman you are. Being the best mum you can be, whatever shape it takes, is certainly nothing to apologise for.
My daughter didn't speak until she was four and used to line her toys up meticulously. In primary school, her teacher flagged up her literal interpretations of things as an Asperger's trait. She has never received a formal diagnosis because, apart from the odd frustration and few funny ways, it has not impeded her progress. For me, this is the tiniest little taste of living with autism but it still required understanding, patience and the ability to deal with the heartbreak, for example, of not hearing the words "I love you mummy" when they were long overdue.
I know my experience is nothing compared to yours but it does help me empathise in some small way.
Your boys are beautiful. x

(visiting from blog gems)

Lizbeth said...

There is no reason to sound like one of the most caring people out there and you do it without reservation...

Jazzygal said...

Fabulous post..if that's the right word to choose and I reckon it was a very therapeutic one for you too. I have no doubt that you are shaping a better life for your child. Every little step they take is such huge progress. You are a fabulous mum :-)

(returning your visit via blog gems!)

xx Jazzy