Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Wednesday, December 26, 2007

Behaviors & What Came First?

I have quite a bit of experience with “behaviors” in children seeing as how my son’s disability seems to be primarily distinguishable (at least initially) by his “behaviors”. I have a hard time with that word, because the implication isn’t a good one at all. What this doesn’t communicate is that my son’s behaviors (and my daughter’s for that matter) are a means to an end, a communication when communication is extremely difficult. I have been blessed in many ways because my son does communicate verbally very well, but that does not mean that he lacks in his “non-verbal” communications in any way. In fact, Sandis often tells me some of the most important things by his actions rather than his words.

While browsing comments on another blog recently, I came across a few comments that irked me to no end, which got me thinking on this topic. One comment was that this reader knows for a “fact” that single mothers train their children to act out in school in order to receive SSI payments for them. Don’t even get me started on this one. The other comment was that oftentimes a child’s behaviors are a result of a lack of structure or boundaries provided by the parent. This stopped me, and in a sense confused me.

If the nature of a child’s disability is defined in part by their unawareness of specific structures and boundaries (whether they are provided or not), how can one truly judge if their lack of boundaries is parent-induced or more a symptom of the child’s disability?

I have to admit, I am sympathetic to a fault to all the parents in grocery stores or any store that are having behavior issues with their children. Why? Because every single time I go to the store with my son it is difficult, at times tear-inducing, and certainly fear-inducing. Sandis will tell you, frustration etched into his brow, how much he hates stores. He says it is loud and there is too much going on and he isn’t able to make good choices in them. In tears he will tell you how hard he tried but there were just “too many people.”

It is these times, or later as I reflect on them, that the dirty looks I am often the recipient of in stores don’t mean as much, or sting as much. I think that these people really don’t know, and how could they? Compassion for the parent and child is certainly lacking in these parts (America) and typically a non-typical child minus a physically apparent disability isn’t going to get much sympathy from anyone (but you will get several offers of a good ‘ol American style beating.)

Behaviors will never deter us from going to the store. It will always be hard. One day little man Sandis is going to have to go to the store alone, and what will he do if he cannot? Sandis needs to be able to learn to shop on his own, independently.

My child’s behavior in a store is not a reflection of me, nor is it a reflection of the efficacy of my parenting. He cannot currently act appropriately the entire time in a store, but with redirection, and a lot of practice he will learn. And when is the best time for him to learn? It seems quite the Catch 22 to not take my son to the store to learn how to act appropriately there because he cannot yet act appropriately the entire time he is at the store.
I firmly believe that as a parent it is not my job to control my children but to teach them. This may be hard to understand for the “Children should be seen (sometimes) but certainly not heard (ever)” generation, but it is more on target for positive growth than any other tactic.

5 comments:

Casdok said...

Great post! I can so realte to it!!

..M.. said...

Thank you!
I totally understand what you're saying. I have a son with ADHD, and although he's grown up a bit now (he's 11) and manages his behaviour relatively well most of the time, it can still be a struggle.
For ME, the biggest struggle is other people's lack of understanding. My son has a disability - it's not bad parenting, he's not spoilt, it's a chemical imbalance that we both struggle with day in day out.
I'm not about to go explaining that every day to complete strangers, but I did feel like getting a T-shirt printed.. something to let people know to stop judging, stop giving us THOSE looks, try walking a mile in these shoes and see if you can find some compassion then!
Behavioral problems are the worst for others to understand, I guess. But how easily we forget to stand back and see the full picture instead of judging on the spot.
I for one will never be so judgmental of any other parent or child... at least that's one lesson we parents of special needs kids learn!
Keep on truckin', you're doing a great job :)

rph3664 said...

I'm the person who said on that other blog that there are people who coach their kids to act up in school so they can get SSI for them. Talk to any teacher, especially one in a largely low-income area, and they will back me up. It makes things so much harder for people who really do have disabilities.

People who were declared years ago to be permanently and totally disabled are being re-evaluated because of abuses like this.

Go back to that blog and you will see my reply, which I wrote before clicking on your link, and I mention that the love for your child shows through in your post (not those exact words).

Peace!

MileMasterSarah said...

M,
I used to try and explain to strangers about my son’s disability, but now I just don’t. I really struggle with ensuring that my expectations of my family suits our needs & capabilities rather than simply mirroring the expectations of others. I can’t explain to everyone, and I won’t because I don’t believe it is respectful to Sandis. Sandis has a diagnosis, but he is not defined by it, and I won’t let him be. If he is misbehaving people can believe he is rotten if they want, but I know that he is learning. The compassion is the biggest piece I have learned from my family. That, and I am never afraid to offer help to a family in crisis at the store or in public. They may tell me to buzz off, but sometimes they say “Yes!! Please!”
Rph,
The problem I have with that statement is that it is a blanket statement. I personally have a difficult time believing that parents would do this, and on top of that, it takes much more than behaviors in school to qualify for SSI. They don’t make it easy to get approved for SSI, and a family has to jump through a lot of hoops to get to the point where they are. As far as people being re-evaluated for disabilities to continue to receive SSI, that is standard. Sandis is scheduled to be re-evaluted in seven years, which is the longest time period allotted to an individual without re-evaluation. Often families are re-evaluated annually, biannually, or every 3 years. I have to actually maintain records of Sandis’s disability over time in case of re-evaluation, which means that Sandis is evaluated privately every other year AND he needs to continue an active care continuum. Receiving SSI doesn’t end with a check, it is a process that is ongoing and takes a lot of commitment from the family. I don’t envision families having that type of commitment and investing that amount of time if their children don’t actually have disabilities. It is somewhat self-defeating.
I did see your reply, and I thank you for the kind words. I hope that the love I have for my children and the time I invest in them is evident. I’m not seeking compassion for only myself, though, I’m seeking it for families that it is just plain harder to direct compassion towards (for whatever reason). Sometimes with education, positive direction, and a real hope for success (outside of welfare options) you can make real change in families. Our system in America just isn’t currently set up for this type of success for impoverished families.

Anonymous said...

Hi. My son has asperger's syndrome. He has really learned to tolerate crowded noisy places better as the years past. It's wonderful you are sensitive to your child's needs at each stage of his development. Did you read Curious Incident of the Dog in the Nighttime?