Pickles and beef jerky

Yes, I did just title a post, "Pickles and beef jerky." Gotcha didnt I? Because what in the world could follow with such a title?

My Big E does not have much need for toys. He has an Ipad he adores, and a few musical toys that play clasical music which he also loves. But, not much else really floats this kids boat. Some kids with autism just never really develop the desire, or ability to play with toys. That is my Big E.

FOOD is what gets my boys attention. We have had quite the rotation of food obsessions over the years. There was the year of "the frosted mini-wheat." I am pretty sure I kept the Giant Food Store, wondering why it was next to impossible for them to keep mini-wheats on their shelves that year. From Christmas that year,  I have this hysterical picture of E unwrapping a giant bag of mini-wheats that my mom bought him from Costco. His happiness over something as simple as shredded frosted wheat, is something I wish he could give us all.

We have graduated from sugary wheat covered squares. He wont touch the stuff now. Finally, too much of a good thing. But, dont worry he has a new food combo favorite. Yes, you guessed it, "pickles and beef jerky."

When he walks through the door after school, I am ready. I have either the jerky at standby, or a bowl of the pickles. It's not just any pickle mind you. He will only eat Mt. Olive Kosher Hamburger Dill Slices. I made the mistake of getting the bread and butter variety...once. No go, he spit them out and looked at me like I had lost my mind.

Then there is the jerky. Have you seen the price of beef jerky? I mean, there are like two or three strips of jerky, in a bag that averages around 5 or 6 bucks! He goes through that in one sitting. So, we ration the jerky. Its like his caviar. Every couple of days he gets to have his "caviar" of after school snacks.

Even though it drives me crazy, it gives ME so much joy, to bring such joy, to a boy who otherwise is pretty hard to please. Toys are optional, but food is a must!

I am sure by the end of this year we will have graduated from pickles and jerky, and will have yet another food fascination upon us. I cant help but wonder what 2014 will bring.....

Time flies

Cannot believe its been since April that I have posted anything. Time flies period, whether you are having fun or not. Not that I haven't been having any fun mind you. But, things have been busy. 

Summer was good. We joined our community pool, and guess what? Nothing terrible happened. Mia didn't try to swim naked (thank god). She also had no fear of the water, just like Big E. Nick took a swim class and completely mastered his fear of "the deep end". He was diving off the diving board within a few weeks of his last class!

The new school year has begun and the kids are all doing really well. Nick loves his second grade class. Ethan and Mia are still doing well at Vista. Miss Mia is exploring Vista like never before. She is loving their indoor pool and is ASKING to go for walks around the campus! This is the girl that had near panic attacks last year at the thought of venturing outside her classroom. Big E is back with his longtime favorite teacher and seems quite happy about it. 

I am ready for what this new school year will bring. 

I think.

Left out; the challenge of parenting your special needs child, while also meeting the needs of your typical children

We are about to embark on baseball season for my soon to be 7 year old typical son. It is an exciting time of year. The weather is getting warmer. I can already hear the crack of baseballs being hit in our neighborhood ball field, as players practice for the start of the season.

Last year was a great first T-ball experience for my son. He had a great coach, and really sweet teammates with helpful parents. Everything went very well, except for one thing. I was unable to attend all of the games, and made it to only almost half of them. Was I working? Was I sick? Nope and nope. I was home with my two children who have autism. I was the "designated" parent who needed to care for my children who are unable to sit in the bleachers and watch their brother.

It really killed me. I so wanted to always be there cheering for my son and his team. I always envisioned being the kind of parent who tried to never miss a thing. In reality, I miss quite a bit. If it were not for my parents who live close by, I might not have even made it to those games. We actually trade off going to the games, my parents and I, alternating who goes to which game, and who stays home with E and M.

Recently, I was at a birthday party with my typical son. I was talking with a few moms when one parent introduced me to another parent I actually knew, as our son's were on the same team last year. I said so to her, to which she replied, "Oh yes, I remember you now, but you were not at many games last year." My heart sank, if only she knew why.

I didn't have the courage to speak up. I really wanted to shout, "You don't know how lucky you are!" "Don't you dare judge me, you've no idea what sacrifices I make." I wish I would have said something now. People need to be aware of our situation. I certainly don't want pity, but a bit of understanding would be quite helpful. I place enough guilt on myself without allowing others to heep on more. Next time, I will be ready with a thoughtful response. Who knows if they will actually have any understanding, but it is my duty to myself and my children, to at least try.

I am excited for this year's season to get underway. The hubby is coaching this year, and I can't wait to watch father and son out there working together. I just can't help but wish somehow it could be an entire family affair. Maybe one day it can be. If not, I am determined to keep on enjoying as much of it as I can.

Smooth sailing

Can't remember the last time I would characterize our life as easygoing. But, right now, when I am asked how things are going, I can (sincerely) reply, "pretty darn good."

Big E and little M are holding their own. E just had yet another clear scan, which means he is STILL CANCER FREE. He is also relatively relaxed and happy, with really low problem behaviors. We made it through a break week with only one "escape" and I located him quickly. Thank god for good neighbors.

Little M continues to slowly improve her communication skills, and recently has become far more social. As I type this, she is peppering me with requests...lollipop? cracker? outside? Watching her chase and play hide and seek with her older brother is my favorite thing to do now. There was a time that I questioned her ability to ever engage with her siblings.

Of course there still are many, and I mean MANY challenges that we face daily. Sleep, what is that? Stress? Oh yeah got lots of that. Love? well that's what sustains us. We genuinely love our unique family.

So I think I will get off this computer and go enjoy my beautiful,unique,family. Why don't you do the same.

Lisa

Lost; when children with autism wander away.

Most parents have experienced that heart-stopping feeling of momentarily loosing track of your small child at a park or mall when they simply wander out of sight. For parents of children with autism, this behavior often persists long past the toddler years. Many children with autism never outgrow this tendency to wander.

In a 2007 online poll through the National Autism Association, 92% of parents reported that their children with autism have a tendency to wander. In 2010, the National Autism Association reported eight children, ages 3 to 8, died as a result of wandering behavior. These children either drowned or succumbed to prolonged outside exposure. This is a very dangerous aspect of autism that the general public is largely unaware of.

There are a variety of reasons why children with autism may wander off. They may feel stress, sensory overload, or simply be drawn to a favorite place and want to get there. Impulsivity is, in general, the reason it continues to be problematic and why they cannot "learn" to not wander away. It is a continual challenge for families, and promoting awareness and understanding of this behavior, is essential if we are going to protect these children.

Our home is like Fort Knox in an effort to keep our son inside. Dead bolts, a security fence in our backyard, and door alarms for staters. Also, everyone who enters our home is always given firm directions to keep the front door locked. I am constantly checking to see where my son is and if the doors are secure.

My son has "escaped" our home on two very frightening occasions. The first time he was found within minutes on the sidewalk a couple houses away from us. The second required a call to 911 when we could not locate him on our own. I could barely keep myself composed as I spoke to dispatch, who luckily received a call as we spoke, about a boy matching my son's description, who appeared disabled and lost in our neighborhood playground. Those were the longest ten minutes of my life.

Parents of children with autism CAN take steps to protect their children. These are a few recommendations made by various autism organizations:

1. Alert first responders. Provide them with key personal information regarding your child and their specific needs. Introduce yourself and your child to local law enforcement and provide them with a recent photo for them to keep on file.

2. Teach your child to swim. Swim lessons for children with special needs are available at many YMCA locations nationwide.

3. Alert your neighbors. If they are unaware of your child's needs, update them. I absolutely recommend this. My neighbors were instrumental in my son's safe return both times he wandered away.

4. Secure your home. Dead bolts, door alarms, backyard fences, are all all good investments. There are even various grants available through local and national organizations. Get in touch with our local ASA (Autism Association of America) Harrisburg branch, to request more information on potential grants or local assistance.

5. Consider an ID bracelet or Tracking Device. Various GPS tracking systems are available, such as, Project Lifesaver or LoJack SafetyNet Services. Again, grants are sometimes available, and can be inquired about by contacting those organizations.


Overall, the key to addressing this unique challenge our children with autism face, is to be as proactive as possible. The more awareness we can bring to this issue the better. Essentially, it will always take a "village" to keep our children who are prone to wandering safe.

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!