Shhh….Don’t say that too loud, you’ll jinx it! Sometimes we have days that seem so calm and boring that we almost start to use the n-word. I mean, you know … that word that is not allowed to be used by parents of children with special needs. It’s the taboo word… And sometimes, I think D works hard at sabotaging it….normal!
First and foremost, there is no such thing as normal. I like to say that the crazy is the new normal. Not the negative, crazy with mental illness and very derogatory – should not be used to describe a group of people, crazy, but the, omgosh I have 4 kids, 1 with pretty severe special needs, 2 with health issues, 1 who is 3 years old, and life is just plain crazy, kind of crazy.
There is no such thing as the perfect family with Mom, Dad, daughter, son, dog, cat, white picket fence, and walking to school after being served a hot breakfast by a mom dressed up with heels and pearls. I assure you, if my family had that happen, they would know I had finally given up what little sanity I had left.
However, normal or not … There are times that families who have children with special needs begin to have thoughts … Those thoughts are really rather taboo among many members of the online special needs community, but I assure you, we all have them…I know you know the moment …
Wow, is this what normal is like? It’s really like … almost normal!
There are times that we all look around and silently gasp at the normal in the room. It’s so normal that it is almost frightening. ha!Yes, I understand the accepted term in most of the special needs community is ‘neuro-typical’. However, that term refers to a person. I am using the term normal in reference to a state of being … like a state of peace that none of us has ever experienced for more than 2.3 seconds. 🙂
Our pastor posed the question, Do you believe, truly believe that God loves you? Not just because you believe the Bible and the Bible says God loves you, but do you truly believe that God loves you intimately, unconditionally, delightfully? He went on to say, If you believe that God’s love has a string attached, if you believe that God only loves you when you are being good, and believe that he does not love you, or will punish you, when you mess up, are you going to just do what you want since he won’t love you anyway?
*Both of the above statements are paraphrased from the sermon, Embracing God’s Love: Knowing God’s Acceptance, by Perry Duggar at Brookwood Church on 8/11/13.
I think it is easier to disappoint when that is expected from the other person anyway. If a person works hard for a period of time to earn the love and acceptance, but then one mistake causes rejection, it is easier to just go ahead and do what causes the rejection. It’s easier to just let it happen, then there is no reason to wait for the shoe of rejection to drop. If a child with a disability, a child who has been abused, any person works hard to earn the love and respect of another person, only to be rejected, it is a more traumatic experience. Even if that rejection is only perceived, not true rejection.
A person’s perception is their reality. For a child with high functioning autism, it is often very difficult to understand communication. These children often misinterpret a person’s emotions to be stronger or different than they are intended. They also may not understand the non-verbal language used. They are often unable to read facial expressions and other body language. These children process in a very concrete manner and since the rest of the world uses emotions and feelings to express ourselves, it is even more difficult.
With D, we could never understand why he thought we were mad at him for something insignificant. Things that we never gave a second thought, he would stew over for hours, days, or longer. He would take longer to process the feelings and by the time he had processed them, his perception was significantly different from the intention.
He may be using a pencil and tapping on the table. After the 99th time of hearing it, I might say, D, please stop. While I was stern, he perceived it as anger. At the age of 10, we realized that any time we used a firm tone of voice, his perception was that we were angry, mad, or just did not like him. As heartbreaking as it is, this is often how he feels about what we say to him. It is not because we really feel this way, but it is because he has a difficult time understanding our tone of voice, facial expressions, and so on.
Since these kids have such difficulty understanding communication, it seems that they begin to feel uncomfortable with the warm, fuzzy, positive times. The times when we, as their parents/caregivers, are rejoicing because they are doing such a fantastic job are the times that they feel good for a while, but then realize they are outside of their comfort zones.
In addition to that, they are also becoming absolutely exhausted from expending so much emotional and physical energy trying to maintain that awesome amount of composure.
When these two issues are combined, these kids may go a long time with no meltdown, but often fall completely apart when the situation would normally only be a simple pouting issue. It is almost like they have to sabotage those feelings of normal because they are so far outside of their comfort zone.
My Belief About The Sabotage
Do I really believe these kids set out to sabotage the normal? Do I really think they spend their days trying to determine how they can best sabotage the good thing that they have going? OF COURSE NOT!
I do, however, think that subconsciously these kids need to let go of their anxiety that has built up during all of the time they have held themselves together. While yes, we give them outlets for their anxiety, many times it is not enough. There are different kinds and different levels of anxiety.
These little ones are not intentionally sabotaging our dreams of feeling normal for just a little while, instead they are releasing all of that pent up emotion and anxiety. They are truly having an anxiety attack, one that is essentially due to the anxiety of misunderstanding another person’s intentions and often feelings of rejection, whether truth or perception.