My son's disability is hidden because if you spent some time with him, you may not know right away that he has struggles. When you hear me describe life with him, you may think "my kid does that too...it's normal". When I hear that, I feel a pain in the pit of my stomach that translates into "you don't get us...it's not normal."
M's neurologist, developmental pediatrician, psychologist, speech therapist, occupational therapist, and physical therapist don't really have a name for his struggles. Overall he struggles with coordination and balance. His brain is slow to communicate with the muscles in his body. Terms that have been used to describe him are apraxia, ataxia, developmental coordination disorder, and sensory processing disorder. The information that comes in can sometimes get tripped up when it is time to come out in either motor or behavioral responses. He knows what he wants to say, but he can't say it. He knows what he wants to do, but he can't always do it. So he sits quietly and watches a lot or he tries and gets hurt or really frustrated.
Here are some glimpses into M's life:
M struggles with fine and gross motor delay. This translates into the inability to dress/undress himself, write, feed himself, run, jump, pedal a bicycle, use the toilet. This means that we have lots of messes, lots of struggles in school, and a kid that is lonely and bored most of the time. His body requires a lot of energy and focus to remain still, so naturally, traditional school/church/social environments are impossible. Subjects like phonics which require auditory processing (translating what you hear into what you see and then using your fine motor skills to make a selection) are extremely difficult and nearly impossible right now. He also struggles to remember and process directions that contain 2 or more steps. So, I've taken on the role of teacher/sunday school teacher to try to find ways to teach him differently. Family time and social events are tricky and we always have to have a contingency plan in case it is just too much for him. M also struggles to control the pressure of his movements. For example, when he reaches down to kiss his baby sister, he bonks her head and she screams in pain. Or, he squeezes her too hard. In his mind, he can't do anything right and he hurts people all the time. I struggle not to be the helicopter parent...hovering over every movement to protect him and others.
M struggles with impulse control. When he wants to do something, it is difficult to control his body as well as contemplate consequences. One example of this is when he stuck his finger down my 7 week old daughter's throat. We didn't notice right away. He was just curious...it also made her stop crying? He doesn't understand that she was choking or that he could've killed her. (She is fine, by the way). Lack of impulse control also results in multiple injuries every day. (Inability to watch where he is walking while he's focusing on walking and thinking about what he wants to do...then he falls, or steps on something sharp, or stubs his toe). M also has no grey area...so when he's hurt/mad/frustrated it is LOUD and INTENSE. There is no quiet crying in our house. This is especially fun at 6am when he wakes up each morning. (haha)
Difficulties with impulse control also impact his ability to control or contain his emotions. He wants to join in when others are happy and excited, but he can't calm down like the other kids. Anger is also an energetic emotion. When we are angry, we have the impulse to scream, swear, hit, stomp etc. This impulse is normal, but it requires a healthy skill to channel the energy without harming ourselves or others. It also requires the ability to tolerate frustration. Although M has worked VERY hard on his healthy coping skills, he will still hit, bite, pinch, scratch or hurt himself when he is angry. Needless to say, we stock up on bandaids in our house and we have many comfortable "time out" spots.
It's a lot you guys...It's a lot. It starts early and goes late. We rarely get a break because babysitters don't know how to work with him. At times we debate for hours over going to a restaurant or a movie because we know that it usually ends in disaster. We get frustrated, we yell, we say mean things, we cry, we get discouraged, we worry constantly about the future, we are judged by other parents and kids, we get into trouble by teachers and are called bad parents by onlookers. We struggle to balance attention to him, our daughter, our infant, our dog, our ministry, our marriage, our jobs, and our God.
One of the most difficult struggles for me is knowing that he is aware of his differences. He sees the kids that are quietly judging him...afraid of him...avoiding him. He knows that he SHOULD know how to use a pencil, a fork, the potty. But his body just won't do what it's supposed to. I see him giving up...getting lazy...and this just terrifies me.
It is also difficult to know that every day a new challenge could arise. He could continue to get worse...although I do see quite a bit of improvement. There is no way to tell what the future holds. So, as I've said before, I will continue to trust in the one who has entrusted him to us...knowing that He loves him more than we do. Stay tuned to hear how M continues to improve.
Until the next time :-), C