Autism In The Headlines: part one (impact)

Last night as I was skimming news stories on the web, I came across the article about a mother who attempted to kill her autistic child and herself. Furthermore, the article stated the mom indicated her distress on her blog, prior to the suicide attempt.

Having at least two things in common with the woman, I found the blog and took a look. There are over 500 comments on the blog.  Many people took the opportunity to post opinions and comments, some of which were cruel and others just plain ignorant at best.

I don’t condone this woman’s actions by any means, but I’m confident there is a lot more to her story than the snippets distributed through the AP news services.

Autism has an ever increasing presence in the news within the last year. I feared Adam Lanza’s widespread devastation would vilify Asperger’s after the Newtown tragedy in December.  It did heighten the awareness of Asperger’s and its related disorders to many in the public who had no clue or awareness of the increasing prevalence of ASD.

Presently, a family in Michigan is going through its own devastation. Thankfully, the daughter is making miraculous progress.  My prayer is that the mother now receives the medical attention she needs.

Some commenters on her blog spouted off that the mother deserves to die. My question is was she not already  to some extent “dead?” What degree of pain, helplessness and hopelessness existed that the mother couldn’t live in the present, let alone even imagine facing the future?

Mentally fit people do not attempt to kill themselves, let alone their children. We ask how could she?  This mother must have been so terribly broken to the point she wondered, how could she not?

The last post on the blog indicates she was attempting to get her daughter the help she needed. This mother, obviously, was very much in need of help as well.

I read a few of the posts on her blog. The frustration is evident. Her road in parenting is far harder than mine. I can’t even imagine her daily routine.

I readily admit I can’t comprehend how she could have attempted such a tragedy and I’m grateful that I can’t!

Yet, I have no doubt that there are people reading her story with empathy for her and an understanding of how she felt.

Autism and its related disorders are affecting more and more people; there is no doubt about that. Just how much so is a question waiting for a definitive answer.

Some parents of ASD children are at a loss and shut down, often oblivious or indifferent to the consequences of leaving the child without resources that not only benefit the child but also minimize certain behaviors, especially those behaviors that can potentially harm others.

Some parents shut down because they can’t face the diagnosis, and especially so when they are forced to do so alone.  Many kids are cast aside (and I’m not just talking about ASD kids here) left to the tether of video games or solitary behaviors that isolate them from people who don’t want to be bothered and that can sometimes incubate destructive behaviors.

Some parents shut down in denial, not wanting to accept a less than perfect child as their own, let alone admit a problem to anyone else. They may gloss over issues or ignore the “quirks” in their child. Yet, failure to recognize or address the situation certainly minimizes the probability for proper medical and cognitive care unless there is outside intervention.

In contrast, other parents and guardians are so overwhelmed with trying to provide everything possible for their kids, they break down. Their kids may be violent and require extensive services the parents don’t have the resources to offer. These parents are often drained from their daily duties there is little energy to fight for the scarcity of resources available from social services. These same people are often struggling with several “crisis” situations all at once, trying to provide for other children and God only knows what else.

I noticed on the mother’s blog how many commenters were confident they had all the answers. I wondered how these people could be so knowledgeable when there are seemingly many unspoken questions.

It appears this mother spent the last fourteen years caring diligently for her child. In addition, there are other family members in this picture to consider. Only that family will ever know the toll ASD took on them and is still taking…

Many commenters blasted how they would never do such a horrendous thing. I certainly hope they would not!

However, I ask would these same accusers offer encouragement, kindness or even prayer to a parent going through a difficult situation? A situation that can be brutal, never-ending, and overwhelming for everyone involved.

I am certainly not casting stones or providing justification.

I am asking painful questions and suggesting conversations that may possibly prevent this type of tragedy from occurring again.

I work in the health care sector and have the opportunity to see many parents of special needs children going along, taking it day by day with God every step of the way. They will eagerly and enthusiastically tell you He is the only way they make it.

I have also witnessed abusive parents who are aggravated and bitter about the condition of a child, doing little more than necessary to minimize their own inconvenience.

People come to me for advice, that’s part of my job. I try and take the opportunity to encourage those parents who are at a loss or distraught and point them in the direction for the best resources. I also emphasize that parents take care of themselves so they can properly take care of the child. I am willing to share my own experiences. Sometimes it is enough for a parent to know they are not alone on their journey and someone else really does understand.

I remember many years ago feeling alone and helpless. Autism was not a “hot topic” as it is these days. But I have one friend whose grown child isn’t on the spectrum but suffered a great physical disability. Her testimony of how she endures a far greater “hardship” than mine and how she continues to make it through with God, her great attitude encouraged me when I had no one to talk to or lean on.

She didn’t have to say a thing. We often talked about everything else besides our kids. But I looked toward her example. If she could do it and make a very hard role look easy, I could at least try; give it my best, and not give up hope.

Now, I want to be that encouragement for someone else.

It is so easy to say what you wouldn’t do, but what would you do?

Would you offer a hand, your heart, a listening ear or even your prayers?

A blogger I follow shared a great story about how one family paid for the meal of another at a restaurant. There was a family with a special needs child and apparently they were not having a good dinner. The frustration was very evident from the parents.

I have seen parents out to dinner with their kids and trying to make the best of it as other patrons give them the evil eye. Sure people want to get out and have a nice dinner, but guess what, these parents do too!

I’m at a point in my life where I can tune out a screaming child. It’s not going to ruin my meal. Some parents don’t get an “outing” on a regular basis. Often, the needs of a child prevent that from occurring. Sometimes dinner goes well. Sometimes not.

Anyway, the gist of the post is that the waitress brought the paid check to the family struggling through dinner and the benefactor had written on it something to the effect of saying that it takes special people to care for special needs children.

I’m sure that generous gesture on one person’s part was the ray of light, hope or support the family needed right at that time. We have no idea of the struggles others are going through. How often do we gloss over opportunities to do good to others because we are so caught up in our own little world?

Many people glibly say they would take a bullet and die for their child and mean it. But would these same people be willing to take a proverbial bullet daily, one that did not offer a quick and sudden death, but instead rendered such emotional and mental agony than ever imaginable that physical demise looks like a blessing in comparison?

I challenge those commentors to instead of easily saying what they would have done to instead, get out of their own piece of paradise and actually do something that would encourage, uplift, offer hope or inspire someone else. A kind gesture is often all it takes to reaffirm to someone that they are not alone. We can become vehicles that provide God’s blessings when we open ourselves up to give instead of condemn.

My experience with autism has allowed me discernment to recognize some needs of parents of kids with disabilities. I offer encouragement when I can. A lot of prayers have gone up oblivious to the people I’ve prayed for. I don’t always know what God is doing in my life but I have learned to be more aware of what is going on around me and to look outward instead of always looking in my own tiny world.

I was told when pregnant with my oldest son there was a chance he would have Downs Syndrome. I got a very callous call at work with that information and quickly fell apart. Well, the tests were wrong, that bullet was dodged and my oldest is quite a brilliant young man, very well acclimated to his strenuous academic workload, his brainiac friends and the occasional video game.

Having dodged a bullet that with the first child, it really didn’t dawn on me anything would ever be “wrong” with the second. I was going through a strenuous time in my life moving cross country, twice, with one baby and pregnant with another. I prayed for a happy and healthy second child. I had my answered prayer and then something changed…

Lan is still happy, almost deliriously so at times. I have to rein him in so he can “focus” on the mundane tasks in life such as chores, school work, responsibilities and maturity. All of which are highly overrated in his eyes. But he is happy and thankfully a very peaceful child.

Maybe his ASD diagnosis wasn’t about him, but rather me. I have learned from it, grown from it and grown with it. I don’t have all the answers and I’m no longer looking for them. I lost interest in asking God “why” many years ago.

I will say that I am grateful for what God has given me, even with ASD and all its implications never that far off. God is allowing me to manage. Some days better than others but He is with me, I am sure. I pray that He is with all the others, like me, who need Him.

Maybe that’s what this is all about for me. My experiences have taught me to not just pray for my needs, but recognize the needs of complete strangers and intercede on their behalf.

Who knows? I am just trying to do the best I can with what I have like most people. I am turning not to my own abilities but leaning on His stability, a lesson I’m not honestly sure I would have learned at this point in my life if not for my youngest son.

Autism is here to stay for the moment. I am hopeful and prayerful for new therapies, remedies and medical innovation. I’ve seen a lot of things in my twenty-one years in healthcare. I know with God anything is possible. My prayers for a healthy child were not in vain, maybe just not quite answered… yet. Then again, “healthy” is increasingly becoming a relative term.

Autism is in the headlines more and more but I pray for more positive stories and more positive outcomes. Many stories focus on the child. There is an ever increasing need to recognize and inform others of the toil these disorders take on the parents, family members and the community as well.

I can’t provide a cure but can provide a smile. I’m not a psychiatrist. But I can pray. Prayer may not sound like much to some people, but I’ve witnessed God answer some “out there” prayers and amazingly so at that!

Instead, of asking “what can one person do,”   I challenge those who criticize and judge from afar to actually do something positive and find out!

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