Friday, September 21, 2012

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.

Friday, April 6, 2012

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.

Monday, March 12, 2012

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.


Thursday, January 12, 2012

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.