To sleep or not to sleep.

Every night it is a bit of a mystery as we go to bed. Will we sleep through the night? Or will we be awoken by E or M? Will it be 2 a.m. or 4 a.m? Will they both actually sleep until 5 or 6 oclock, which is considered sleeping IN in our house!

I try to remember what is was like to go to bed and expect to get a goods night rest. I can't honestly recall those days, and maybe that is for the best. I now go to bed as early as possible, so that I might catch a solid 6 hours. I am not alone in this plight. This is an almost universal challenge for those of us raising children on the autism spectrum. Night time awakenings are so common, that I would have trouble finding more than a few families that do not have sleep issues with their children with autism.

The million dollar question is why? Why do our kids have such trouble getting a full nights sleep? What I have read most consistently is that it has to do with their brain chemistry. Their brains ability, or lack thereof, to produce and regulate the hormones we need to have normal sleep and wake cycles.

Many of us supplement, supplement, supplement. We supplement with melatonin, which does help both of my children. We also supplement with a vast array of vitamins and minerals, said to aid the body and help stimulate more restful periods of sleep. And we sometimes turn to drugs as a last resort. Antidepressants are commonly used with patients suffering from insomnia. Antidepressants help our brains produce and regulate seratonin, which is often said to be lacking in people with autism.

Personally, I would love to see far more research dedicated to finding what natural methods are best in aiding those with autism get the rest they need. Drugs are sometimes necessary, but many parents prefer the natural route if at all possible. I am facing another tough decision with M. She is not getting the rest she needs, and the melatonin is no longer working. She is missing some days of school, and the negative impact is increasing as the months go by. I will have to make a decision soon as to whether we do a trial of an antidepressant. It has helped E in a major way, and he now sleeps through the night more often than not.

So the question remains, "To sleep or not to sleep?" Will have to get back to you on the answers I find for M. Today she has been up since 3 a.m. and is still going strong. Coffee please!!!

Did I just say THAT?

Sometimes to amuse myself, I keep a running record of the most ridiculous things that come out of my mouth, while parenting my funny kiddos with autism. I thought I would share this weeks top ten, Letterman style, with you all.

1.)  "No Ethan, you cannot have cheese puffs for dinner, because you already had them for lunch."

2.)  "Ethan, for the love of God, would you please keep your pants on for just one hour?"

3.) "You already had 5 baths today, you are going to shrivel up into a prune."

4.)  "Ethan, please go back to bed it's only 2:30 a.m."

5.)  "Mia, please go back to bed it's only 4:00 a.m."

6.)   "Ethan do NOT hang off the side of the deck, I cannot jump down to catch you!"

7.)  "Mia, if you eat this apple, I will give you 3 lollipops."

8.)  "Mia ate a roll and asked for another, Happy Thanksgiving Mia!"

9.)  "Ethan get OFF THE ROOF OF THE VAN!"

10.)  "Ethan, you are entirely orange, I see you found the cheese puffs again."


Feel free to comment and add your own. I know you have them parents!

Panic and the Pediatrician

I am not quite sure who dislikes going to the pediatrician's office more - myself or my daughter. Yesterday's visit was so lovely. Not! It, (the screaming) began even before we arrived. She figured out that was our destination at least a few miles away, as we made "that" left turn. For those of you that do not have children with autism, let me explain.

While our kids with autism seem "tuned out" to much of our environment, at the same time they are highly "tuned in" to other aspects of our environment. Many of you have observed children with autism covering their ears when they hear certain sounds. Mia dislikes the sound of a vacuum cleaner, so much so, that as we were passing the vacuum cleaners in the aisle at Target the other day, she yelled and covered her ears. If she had not begun to yell, I would have had no idea we were even walking past vacuums. They were not turned on, but her fear is so intense the mere sight of one triggered that reaction.

Now let me get back to the fun we had at the pediatrician's office. Ofcourse there was much crying. And, ofcourse, there were many "gawkers" both old and young. I am used to this, and I have made a habit of blocking out the staring and making her my sole focus. Yesterday she relaxed as soon as I got out the trusty ITouch and "Dora" once again saved the day. 

While in the waiting room I noticed two young brothers watching her intensely. They cocked their heads in unison, attempted to gain her attention, and smiled at her. Their empathy was apparent, and all I could think is how beautiful it was to see, and how I hoped they were able to retain it as they aged. The adults pretended not to notice. I was appreciative because I much prefer this response to one that involves lots of staring, or my least favorite, a completely blank stare. If you are going to make eye contact remember your eyes convey how you feel. By all means give that struggling momma a smile. I do so every occassion I am given.

We managed to make it out of there in one piece again. It is starting to get easier as she ages. She is slowing realizing that while it might not be her favorite place (or mine!) she can get through it. We walked out the door as she said, "Bye byes home?" I smiled at her and drove to Wendy's for our rewards. She had chicken nuggets and I got a big Frosty Float! Until  next time...

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.