I'm Catholic, and the thought of missing a Sunday Mass for any reason sends shivers of fear down my spine. The confessions always sound like a laundry list of reasons that OTHER people would prefer I not take da Creature to Mass. It was always bad, because I'd get reports from the nursery, even very early on, of the child who never quit screaming, who had bad chronic diarrhea, who would throw things at other children, and then, even before he had a chance to AGE out, there were murmurs of kicking him out because he was big and couldn't play nice with the other children. Once people identify your child as a "problem" it's all they see. Behaviors that go unnoticed, untended, and uncorrected in other children become the sole focus of the adult on YOUR CHILD and there's a snowball effect. Especially if he doesn't feel good. You're never gonna know he doesn't feel good, by the way. NEVER. He won't tell you. I don't think he even knows himself.
Once they effectually got rid of him from nursery, I was faced with this deep-seated parental NEED to teach him about Mass. I love the Church. I LOVE Eucharist, and I have a deep devotion to the sacrament. I want desperately to just go back to singing in the choir and being a congregation member.
All that has been stripped from me. Every week, all Masses, we tried it all. I tried daily Mass for a while in the summer in the hopes of banishing the "new" the "different" but to no avail. He gets very overstimulated, becomes loud and all his ticks come out...clicking, popping, thumping, making random repetitive noises, and then when I TRY (God bless me, I've TRIED---stop giving me that LOOK Lady, I know he's doing it, you SEE me trying to make him stop, I'm NOT A BAD PARENT YOU JUDGMENTAL JERK...*sigh*) to make him stop he gets defiant and beligerent, and then the REALLY distracting behaviors make their appearance.
Meanwhile, I've completely been consumed by da Creature's behavioral crud and no longer have any spiritual focus or awareness other than him, the beauty and majesty of Christ's sacrifice lost in a sea of frustration, humiliation, embarassment, and fear that someone will suggest we just not come back to my face. I cried a lot at first. I went to confession a lot at first. Then my priest (outside of confession) told me that da Creature was sick, and therefore, I wasn't under the obligation that others were....I'm sure he meant well. It made me feel like such a complete failure.
In the piece below, the nice lady recognizes the pain on the adults' faces. I wonder some times if anyone here ever sees it on mine? I've lost SO much to take care of this child. I'm SO incredibly isolated and lonely and stuck in an impossible situation and I can't even go to Mass anymore in a way that makes sense. Oh, I can hire someone to take care of him during Mass, but even the lady I hired doesn't want to be with him anymore and I'm out of humans.
Normally, I'm the amazing solution-girl. Now, I'm the sad failure-girl. Somehow, some way, there have to be some compromises. I'd like to band together with the other isolated parents who can't bring their children to Mass because they can't be in there, and they can't be sent to "Children's Church" and they are too old for the nursery, and pool our resources to hire someone for a "disabled child" care person during Masses so we at least can go to Church. However, the sad truth of that is all of us are so scattered and alone dealing with these children that we rarely come up for air, and organizing us would be a difficult task indeed. Not to mention the problem that the Church would have with liability for a grouping of developmentally altered destructo's all grouped together....
Anyway, please read the article below. We really do NEED more people like her in our lives. The Nightmare gets better when the people around you are not all wrapped up in THE LOOK.
To read the entire article "Profound Lessons From Asperger’s Syndrome" By Samantha Keller by clicking on the link because we definitely Need MORE People Like THIS! :):
The boy’s father came back to the table with an enormous piece of carrot cake for him. He gently placed it in front of him with a plastic knife and fork and smiled at him. In one fell swoop, the boy inhaled half the cake. The fathers smile quickly disappeared. “Slow down bud! Use your fork and knife!”
But the boy did not like to be reprimanded and he grabbed the knife like a dagger and stubbornly resisted his father. In a battle of wills, the boy reluctantly cut the remaining piece in two and shoved them both in his mouth in rapid succession. Trying not to tremble, the knife only inches from my face, I dared not move an inch. In lightning speed his father grabbed the knife, cleaned up the frosting smeared all over his face and sent him off to explore the church. His mom trotted after him, glancing back with an apologetic look. The father collapsed into the chair and rested his head in between his hands, exhausted and embarrassed.
“You know you are doing a great job, don’t you?” I said.
His eyes filled with tears and he whispered, “I don’t know. He’s better at home. He feels safe there.”
Our eyes met, acknowledging a difficult situation at best, recognizing that sometimes there are no words. I could see his fierce and unconditional love for their first-born son mixed with sadness, disappointment and struggle. His wife came back to the table and the little boys ran off to play and care for their brother, another reminder of how their whole family was affected by Apsberger's.
“Does he ever get lost?” I asked, noticing how he would become entranced by an object and take off at full speed only to have his attention caught elsewhere a moment later.
“Not usually," they said in unison.I can relate. So much, on every front. I long for those moments when I brave eye contact with another adult and THE LOOK isn't there. I'm not a big fan of pity, but compassion works. Understanding. Reading the implicit post-it note on his forehead and having a forgiving and compassionate heart about whatever offensive thing my creature just did.