Wednesday, December 21, 2011

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!!!

Sunday, November 27, 2011

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!

Thursday, October 20, 2011

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...

Thursday, October 6, 2011


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".

Monday, August 29, 2011

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".


Saturday, August 20, 2011

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!

Friday, August 5, 2011

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.

Sunday, June 12, 2011

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.

Sunday, May 15, 2011


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".

Monday, April 4, 2011

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.

Monday, March 21, 2011

Mommy Go Faster!!

Just like every other North American family we have been capitalizing on the few warm, pre-spring like days, we have had the past few weeks. After being cooped-up inside for an entire winter these days are so delicious. So, it was the first time we have seen Mia outside in quite awhile. She was not impressed. She stood inside peering out at us through the sliding glass door. Every minute or so she'd stick a foot out, let it touch the deck, then jump back in while screaming. It was as if she was saying "I know something is going on out here, I don't want to miss it, but I just can't do it people!"

She did this stick a foot out and run back in thing for about 5 minutes. Nick and I looked at her every so often, and cheered her on saying, "Come on out it is going to be alright".  Finally she made it completely out onto the deck. She looked down at us smiling and laughing. Guess she finally realized she would not vaporize or melt in the mid-day sun. Then she really hit her stride. She came down the deck steps and into the backyard!

When she made it into the backyard, I really started watching her to see what she'd do.  Last year at this time, we were just starting to realize that Mia might have autism. She would pace back and forth over the stones in the landscaping or sit and play in the dirt. She was terrified of the swing, and could only tolerate the slide. I remember watching her from inside the house, picking apart each aspect of her behavior. I tried to rationalize the autism away by telling myself she is a girl, not a rough and tumble boy like I am used to. There was no escape from her impending autism diagnosis. I tried to reject it, but very slowly had to accept it instead.

So here we are almost a year later. Mia is making progress all the time. She is becoming far less anxious and much more exploratory. She is beginning to use her language more, and is putting two and for the first time yesterday THREE words together! It happened while outside of all places. I was pulling her in her wagon when I heard it. At first it was only a whisper, and I had to stop and listen to make sure I really heard it. Then she said it again a bit louder, "Go faster Mommy".  My mouth hung open for quite awhile and I finally realized that I had come to a complete stop while I stared at her. She glanced at me and said it again, "Go faster Mommy". So man let me tell you I went fast. I can already see she is going to love those Hersheypark rides.I went in circles through our backyard speeding up and slowing down. I had such fun with her. That's the thing about autism. It teaches you to appreciate every little thing. Every word, every skill mastered, every accomplishment.

Thursday, March 10, 2011

Cancer in the rearview mirror?

Did not get much sleep last night. It's no wonder really. Today is Ethan's "diagnosaversary" and his 3 month MRI. So, in essence, today can turn out to be a day of continued celebration, and reflection on how far we have come, or it could turn out much differently.

As I write this, Ethan is under sedation having his 3 hour scan performed by some of our much beloved physicians at Hershey Medical Center. It just so happens, that on this very day 2 years ago, his brain tumor was initially discovered. Two years ago today. I remember everything about that day. I remember hearing the tremendous thud, as he hit the floor when the intracranial pressure became too much for his brain to tolerate. I remember thinking it was just an accident, he must have been climbing and fell accidentally.

Turns out it was an accident that saved my sons life. That fall led to his CAT scan that discovered the cancer. I joked to the hospital chaplain that his guardian angel, who I firmly believe he has always had, was "off duty" that day. After the brain tumor was discovered the chaplain reappeared in the waiting room. He very seriously approached me, looked me directly in the eyes and stated, "Lisa, his guardian angel was not off duty, that angel knew this accident was necessary". I still get goose bumps when I think about that moment.

I have never been very religious. I have never attended church on a regular basis. I am embarrassed to admit my children are not even baptized. But, after this whole experience, for the first time in my life, I truly felt god's presence. There is no other explanation for how beautifully Ethan has handled all his treatments, surgeries, and setbacks. Ethan is our miracle. Hope and faith are essential to families dealing with childhood caner. We hold them as close to our heart, as we do our very children.

So, the scan is today and tomorrow we meet with his oncologist to go over the results. Like all families dealing with cancer, that scanxiety can feel brutal. Good news brings relief and a return to normalcy. Unexpected news sends you "back in the ring" for yet another round. So as I pray for my own son, I also pray for those of you reading this, that are fighting a battle of your own.


Thursday, March 3, 2011

Super Sibs

What must it be like to have a sibling with autism? We, as parents, connect with each other. We discuss all  aspects of raising a child with autism. But with whom do all the siblings speak? Where can they turn? Do they even posess the ability at their young ages to know that their feelings are justified, and often quite similar to their parents?

My son's private school for children with autism is organizing an event for " Siblings and the Spectrum".  I am taking Nicholas next week. I actually am a bit nervous for him. I would like to sit in for at least part of the time, hoping to hear a snipet of how these sibs really feel. I am eager for Nicholas to have this opportunity, but also nervous about what he might say and how I can help him through it.  I want to have the perfect words ready to aid him. I want him to know how hard I know this is for him. I bear witness to how hard he has to work to have even the slightest bit of a connection to his siblings, whom both have autism.

When he does connect he and I really celebrate our victory together! Last night I was able to get Mia to say his name while she pointed to him. What an incredible grin he has when she is able to say his name, high five him, or tolerate a hug. The other day Ethan threw a ball back to him, and Nick screamed, "MOM did you SEE that?"

I think the most important thing is to help our typical children develop a bond with their disabled sibs. Also, let them know that they have a "say" in how things are handled when difficulties arise in the household dealing with autism. Autism is a huge part of our world as a parent, and we should never underestimate just how much it impacts their life as well.

I had Nick's parent teacher conference a few weeks ago. I was told that he works very hard to do his best and that he is a very compassionate friend. I remember last year when he was in preschool, his teacher told me he is always the first child to ask about a student when they are absent. She said he was always the first one on the "scene" when someone fell outside or had any minor injury in the classroom. So I have this pretty empathetic 5 year old. Cannot help but wonder if having siblings with autism has had anything to do with inspiring such a wonderful character trait. No, I do not wonder, I know that autism has played a big part.

Tuesday, February 22, 2011


It seems to me that autism can be like the wind. Some days, barely noticeable, just a steady manageable breeze.  Other days, it is howling, so fierce you fear your home, and all that inhabit it, will be picked up and carried away.

Well it has been windy around here lately. Mostly because I have been dealing with Mia's transition from Early Intervention to a preschool program.  Boy how I love Early Intervention.  Those therapists come right to your home providing guidance and education to you the parent, while giving your child therapy in the comfort of their home.  I remember back when Early Intervention ended for Ethan.  I felt a bit lost then too.  But, we "found" The Vista School and we were not alone for long.

Mia has had pretty intense ABA/VB programming since this past June.  I am really proud of the team of individuals we have had working with her.  I have had quite a few parents and professionals remark on our accomplishments.  I am very thankful for Mary Barbera, our BCBA.  She has pushed me when I needed pushed and guided me when I was struggling.  I have learned so much from her and continue to, and I thought I already knew alot! 

I am currently working hard to continue to make the best decisions for Mia.  It is pretty much a full-time job.  I am really worried about her and how she will do without me right beside her, as I have been up to now.  How can I protect her? What if it is all too much for her? I am so used to being right there to comfort and support her. She is transitioning, but so am I really. This period of change is hard, but necessary.

There is more to come, so I better "batten down those hatches".  For sure that wind will pick back up again.  Hopefully, setting us back down somewhere safe and equally comforting.  Those winds of change can be a good thing.  I feel the need to repeat that to myself.  Those winds of change can be a good thing.

Tuesday, February 8, 2011

What is Hope

As parents of children with life threatening illnesses, or neurological impairments, we often cling to "hope."  The hope that oneday things will be better, as we struggle to manage day to day life with our children. So recently, I began to wonder what exactly is hope, and how does it, or the lack of it, impact our family lives. Of course I started with Wikipedia. Wikipedia, that super cool virtual dictionary at your fingertips. Here is some of what I found:

Hope is defined as, "The belief in a positive outcome related to events and circumstances in ones life." Emily Dickinson wrote in a poem that "Hope is the thing with feathers that perches in the soul." Hope can be passive in the sense of a wish, or active as a plan or idea, often against popular belief, with persistent, personal action to execute the plan or prove the idea. Hope is important to both well-being and educational performance; people low in hope are more likely to be anxious and depressed.

Personally, I believe it is hope that propells us into action. The action of obtaining effective treatment for our children, of researching options, and meeting our own personal needs. Remaining hopeful is one of the best ways to ensure your individual happiness, as well as the well-being of your children. Unfortunately, hope does not always produce a perfectly positive outcome. I know far too many families that have lost their child to cancer,and many families struggling daily to find help and services for their children with neurological impairments such as autism. Although, these families fight hard and never give up hope. They are some of the strongest people I know.

Recently, a fellow autism momma friend of mine, told me her 12 year old formerly nonverbal son with autism, has recently begun to speak some words. She quickly followed it up to say, "I guess we should never give up hope."   I also know a local family who has a son who battled the same brain cancer as Ethan. They are now preparing to go to THON with a healthy and continually progressing 2 year old.

You certainly do not need to have major life challenges to appreciate the positive effects of hope. We all need hope in our daily lives. Whether it be the hope that you will finally get your dream job, or that your child will begin to do better in school, or that your husband will unload the dishwashwer without being asked.  So, the next time you feel that little bit of pessimism starting to take over your thoughts and eventually actions, remember the importance of hope and act on it.


Thursday, January 13, 2011


Last evening, while I was upstairs bathing my son, who has autism, I could hear my hubby downstairs telling my daughter, who also has autism, to "go upstairs and ask mommy". So while Big E sat there lounging in the tub (his favorite activity), I wondered what little momma could want and why dear old dad needed big momma to figure it out, especially since I already had my hands full. That is when she walked into the bathroom. She was carrying a jug of Aunt Jemima syrup. Before I could begin to wonder what I was supposed to do with it, she declared, "PANCAKES"! I honestly almost died right there. You see, little momma has never done anything like that before. To even connect that pancakes need syrup, and know that maybe showing someone syrup might get me pancakes, and then when that fails, to find someone else and say a totally new word, "pancakes", is phenomenal progress for her. These are the moments we "special needs parents" live for. These are the moments that make all the difficult dark days less painful. So, at 7:30 last evening, I made a batch of pancakes. They were the best pancakes I have ever eaten, and she had the biggest grin on her face while eating them. I think she was proud of herself, rightfully so, and boy was I proud too.