Once again, a friend had a facebook post about how her son will not qualify for services anymore. I had to read this comment:
You as parents should be so proud of yourselves for the efforts you have made!Pride? Once again I have to read an ignorant statement, not intended to be so, but hurtful to those of us who do so much and don't have the progress. But this isn't about pride. I do not have pride because of my children. I have fulfillment. I am not ashamed of my children. I love them with all my heart. I also will never feel like I can do enough for them, and yes, particularly Zach. It seems like the more I do and learn, the more I realize that I could do for him.
I think doctors have really let us down. When we pursued Zach's chronic vomiting, we were told that some kids just puke. Oddly enough, we also heard that some second born boys just don't talk too. Recently, our doctor told us that a recent study indicated that kids on the spectrum have no higher incidence of GI issues. Yeah, well, after communicating with so many families, I can say, hogwash to this study. I think it is much like the studies that discuss seizures. Autism is a spectrum disorder, and perhaps there is a subset that these afflictions do have a higher incidence with.
Anyhow, I don't care about everyone else right now, I care about Zach. Vomiting is not just an inconvenience, he is in distress over it. I want to know what medically significant issues he has. I do not want to blame them for his autism, but I want to treat them nonetheless. I don't wish for Zach to talk just so that he can be conversational or social. I don't wish for Zach to talk so that he can tell me he loves me; I know, without a doubt, that he does.
Zach cried inconsolably for an hour tonight. It was not a tantrum. It was not behavioral. It was pain expressed the only way he knew how. I had no idea what was going on. He had no fever, he didn't fall or hurt himself. It appeared to come out of no where. I had asked him if it was his tummy. He echoed tummy back to me, while crying. I wasn't sure if this was him telling me his tummy was hurting, or if he was just being echoic. The only gesture he made was to bring my hand to below his eyes to wipe his tears away. In this moment I hate freaking autism as if it were the devil himself.
He looked me in the eyes with such intensity, he asked me to hold him ("up"), he asked for the comfort of his blanket ("blankie") , and then he threw himself on the ground, writhing in pain. We called the triage nurse at the pediatrician's office. They told me if he wasn't settled down within the hour, that we must bring him to the hospital, since he is unable to tell us what is going on. As I was on the phone, he erupted all over Steve. A half hour later he was settled down, and an hour later he was asleep for the night.
This was the second such incident like this this week. The other incident happened during the day, while I was with Sophia, and Zach was in the other room. He came running in the room screaming, he wouldn't let me hold him, he ran away from me when I attempted to console him. He cried so hard for so long, that Sophia was in tears herself. After around 30 minutes, he stopped, and he slowly returned to his own self. A few hours later, Sophia asked what the bump on Zach's head was. I looked on Zach's bang covered forehead only to notice that there was an egg there. He must have banged his head, but was unable to tell me.
A friend recently asked me if I was done "freaking out" over Zach's situation. This very irritating remark really makes me want to slap someone upside the head. This is not just some learning disorder, at least not for Zach. Some people have children on the spectrum that are very high functioning, and could likely tell their parents if they were not feeling well. That isn't our situation, at least not now. We are desperately trying to teach Zach to express himself and indicate how he feels. Our first step is by teaching body part identification. He knows head, eye, nose, ear, tummy, teeth, mouth, foot, and hand. Now to teach him "oww".
My heart has broken with these incidents this week. This isn't about pride. This is about trying to take care of my son, especially when he is hurting. Tears are bad enough, tears without meaning is the ultimate in frustration. What if he was having an appendicitis? Would I know?
Yes, I am still freaking out. Any parent who gives a damn about their child freaks out when they cannot tell you if they are in pain. If you have a child who doesn't have this issue, thank God. Then, take a second before you express foolish comments about thinking you could possibly understand what we are going through.