Brothers

It is not often that I am lucky enough to capture such a nice image of my sons together. You know how it goes, one is either blinking, looking wild eyed crazy, totally disengaged, etc. So let's just say I celebrated this one quite a bit yesterday after I captured it. And yes, quickly after it's capture, there it was proudly displayed as my facebook profile pic.

They say a picture is worth a thousand words. This is so true. When I look at this picture a million things come to mind. At first glance, I simply see two brothers dressed and ready to go to school. But upon further inspection, and lots of reflection, I see so much more.

I see two brothers who may be dressed alike, but who are vastly different.  Big brother Ethan, our usually easy-going, nonverbal, lovable boy with severe autism. Little brother Nick, who functions as a big brother, our outgoing, sports loving, and sensitive guy.

Even though I work hard at developing connections, or shared interests between them, there really are none. Without a doubt it is hard and it always will be. Nicholas has long since gotten over the fact that Ethan cannot "play" with him in the typical sense. This is all Nick has ever known, but I suspect deep down in that sensitive soul of his, is where it resides. Surely I will hear about it one day when he is ready and able.


 I have always felt one of the most important things you could do for your child is to give them a sibling. Someone to have a shared history with. Someone to learn how to navigate the ups and downs of life alongside. For now, they have each other and will develop their own relationship. Hopefully, that shared history will help transcend the disability that makes their connection so difficult. And, hopefully, they will forever remember the importance of being "brothers".

Have No Fear

I had a realization recently about myself. The transformation from within had been unfolding for some time I believe. However, it was my 40th birthday that drove it home for me. I really have very little "fear" left in me.

I used to live in fear. You know, that motherly kind. "What if my baby stops breathing. What if my children are hurt in a car accident. What if my child is abducted by a stranger." That was all before our 2 year period of our worst fears realized.

Two years ago my then 8 year old son, who has severe autism, was diagnosed with brain cancer. Quite honestly, at first it was hard to believe. How could a child already struggling so fiercely with issues we all take for granted, be given such a horrific additional burden to bear? What are the chances of this happening I thought. How could lightning strike my child yet again? I became obsessed with statistics. What are his chances of survival, of it recurring after treatment, of it leaving him even more impaired than ever?

Cancer has a way of scaring the crap out of you. There really are few things quite as scary. But guess what? He came through it better than anyone could have imagined. He is a healthy boy again, autism and all. But, alas, yet another unthinkable was unfolding in our household. My 2 year daughter who was not developing as she should, was diagnosed with autism too. She was diagnosed just 2 months after my son finished his year long battle with cancer.

At this point I was angry, still am really. What more can or will happen? How often does lightning "strike" one family? But guess what again? My daughter is making slight progress each and every day. It is not easy, and my days are very busy and stressful. But, we are still here doing what we have learned to do, move forward the best we can.

One of my favorite quotes is by Eleanor Roosevelt and reads, "We gain strength, courage, and confidence by each experience in which we stop and look fear in the face. We must do that which we think we cannot". So my message to you is pretty simple. Believe in yourself and your ability to handle whatever life throws at you. Hardships and pain strengthen you - welcome them. Life is not supposed to be easy and you are not entitled to a free ride. Your life could be better, but it could also be much worse. Appreciate what you have and strive for what you want. Breath deeply, and "have no fear".

Lisa

Dollies, yes dollies!

Here is a pic of Mia playing with her new doll.

I can barely contain my excitement. Oh the possibilities.

I already have a couple new dolls on my Toys-R-Us list.

Now, if I can just get her to allow me to play with her.

Will keep you posted if any of us accomplish that!

Sometimes Autism just plain sucks!

So I have not posted anything in awhile. I usually wait for something cute, funny, or inspiring to happen and the words kinda roll out onto the page for me.

Things have been difficult for me lately. Autism has a way of zapping your energy. Being creative when you feel depleted is not easy. So, how about a dose of autism reality.

Autism sucks because:

It affects every member of your family.

It can sometimes severely limit your ability to be in the community with your child.

When you are out in your community, you can feel enormous pressure to keep your child from acting out.

It is physically, mentally and financially draining.

It robs your child or children, of the ability to express how they experience the world, how they feel, and what they know.

It leaves you, the parent, forever wondering what could have been, should have been, and what will be.

It forces you to watch sometimes helplessly, as your child suffers through mental and physical anguish.


I have incredible hope for my children's future. I will do everything within my power to see that they continue to make progress. But man am I tired. So tired.

Mommas Night Out

It is a well known fact that parents of children with autism do not experience many "nights out on the town". Honestly, we have grown pretty accustomed to being as creative as possible in our quest to procure a sitter, family member, or any able bodied and minded individual willing to take on the challenge of watching our children with very specialized needs.

For example my Big E has been known to sneak out of our home, maybe clothed, maybe not, and wander around looking for an inviting looking outdoor deck. My neighbor two doors down was standing in his kitchen one day, as Big E pulled open his sliding glasss door, and entered his home. Soon after, my husband ran through the door after him as my neighbor chuckled. Of course my son sees nothing wrong with this. He was bored, looking for a cool place to hang for a bit. The danger in this escapes him and always will.

So, finding a caretaker, preferably with an extra set of eyes and ears, is not easy to come by. Plus, how can one truly enjoy themselves if their mind is "on" what is happening at home. What we do in our household is very similar to what most of our friends with kids with autism do as well, we alternate having time off, since one parent pretty much always needs to be present.

The other night I had an opportunity to experience a night out with other autism mommas like myself. I haven't laughed that much in quite awhile. No censorship needed. Complete understanding a given. None of us were too eager to end the evening. The conversation could have gone on long into the night I suspect. We agreed to meet up again and we will, some of us at least.

I wish it were easier for us all to meet up more often. Our children require so much, and recharging our batteries is so essential. I worry about many of my friends that have children with such specialized needs. They simply do not have the luxury of taking care of themselves. Their children come first and always will have to. They will not mature naturally, require less care eventually, and many will never leave home.

So, we are left to be extremely resourceful and capitalize on small opportunities here and there. I am determined to do so, and will continue to try and help other friends in similar circumstances do the same.

I am already looking forward to meeting up with these ladies again for more laughs, advice, and complete understanding. Whether you have children with special needs or not, that is something we all can appreciate.

Surprise!

I love a good surprise. Not a "party" but, a surprise that involves finding out something fantastic about your kids that you did not expect.

Mia had a surprise for me last week. She started preschool. I had prepared myself for what I thought might be a difficult transition. I wasted some energy on that you might say. Mia did great. By the second day she literally ran to the classroom door. I did that stop and stare thing I do, mouth hanging open. Finally, I shut my mouth and smiled BIG.

I am still smiling a bit. It feels good to know she recognized almost immediately that school is fun. With autism, you just never know what to expect. And as parents, we sometimes lower our expectations almost in anticipation of what could be a disaster. We become good at it too.

Our kids with autism struggle with so many things. We parents struggle too. Autism really is a family affair. The challenges deplete us, but the victories enrich us. So, when you have a victory, however small it may be, hold it close. Remember there will be more to come.

I can't wait to see what other surprises Mia has for me. Maybe next time I can surprise myself and expect great things from her. You know what they say, "you have to believe in order to achieve".

The Maddening Messes of Autism

There really isn't anything funny about autism. The two a.m. wake up calls, the continual advocacy efforts, the behaviors, the stress of finding quality care so you might enjoy a night out with your spouse. And that is the short list. So, I like to find the hidden humor in it all, whenever I possibly can.

 There is one thing that always does strike me as funny. Especially because I have 100 percent, self-diagnosed, Obsessive Compulsive Disorder. I like things neat. I spend a ridiculous amount of time attempting to keep things neat. I have three young children. Why would I torture myself so you ask?  Because I am straight up OCD!

So here is the funny part. Children with autism are NOT NEAT. I could tell you stories that would make you retch, but I won't. I will keep it simple and light. But you autism momma's out there know what I am talking about, when I say stories that would make you forever grateful that you yourself had only a "typically" messy child.

Let us start with a story I heard from my sister, who used to work with families that have children with autism. There was this boy I will call "C". He loved to drink Kool-aid, and lots of it. So one day he figures he will try his hand at fixing himself some. So C finds the sugar, a couple 5 pound bags I believe. He opens and pours the bags onto the kitchen floor. Then he manages to find the packs of Kool-aid, empties them on the floor too, all in one massive heap. Then C gets two sticks of butter opens them and places them atop the mountain, I guess just for good measure. This happened almost ten years ago and my sister still recounts this, usually after I tell her about one of Ethan's recent masterpieces.

My stories always revolve around food. Ethan likes to take one bite of food, for every two to three
bites he mashes and then drops to the floor or chair. No lie, each and every time he attempts to get up from the dinner table, either his dad or I rush him like a linebacker, in an attempt to brush whatever mess he has on him off, so he does not carry it about the house. My five year old typical son, having lived this way most of his life, has been known to yell, "No Ethan.....wait for Mom!"

I had a contractor at the house a few months ago fixing the door directly behind Ethan's dining room chair. This man happened to be here after I fed Ethan lunch. He looked at me then back at the mess and asked, "Is that from one child?" Yes I said, ONE child after ONE meal. He just shook his head and muttered, "holy __"

Ethan also likes gum, alot. So I allow him to chew gum, which I find stuck in places I did not know he even cared to go. Like behind the couch, stuck on every shoe we have, on most toys, inside my cupboards, etc. I have become masterful in getting gum out of rugs and off shoes. I have experimented with many types of gum, hoping that I will discover a brand that is "less sticky."  Kinda
stupid I know..... ALL gum is STICKY!

But honestly the ultimate joke is on me. These mega mess catastrophies have really challenged me to relax my standards, and overcome my OCD to the best of my ability. Can't say I am there yet, but I am working on it. Believe me, each day gives me a new opportunity.