To bolster our perception of Mark as a special needs child, we had nicknamed him Sparkie. It was clearly a misnomer until the day Mark made himself a waking presence in our home. I heard him let out a complaintive cry from the other end of the house. It was alarming in its strength, I ran all out to see if he was hurt only to truly meet my son for the first time. He was looking directly up at me with eyes I had only seen a few times since he was born five weeks earlier. There was expectation in his face. His tiny fists were waving crazily in the air, and, his feet were bicycling. He was gurgling and making noises! I picked him up for a joyous cuddle and he smiled at me for the first time for the first time in five weeks.
Now that we had Mark’s official approval of this being born and growing up plan, we began his Infant Stimulation program in earnest. Twice a week lovely, talented Sisters of the Oath- type therapists came to our home to teach me how to help Mark grow up. Mark was an official client of our local Alta Regional Support Services, our local school district special education services, and the California Hawaii Elks special needs therapists: all free services to families with children of special needs.
Those days were a blessing in a new world that was still a murky bewilderment. We would exercise and massage his weak muscles, rub his skin with different textured cloth, engage him to hold his eye contact, and enticed him to mirror expressions on our faces. At four months he began to coo and giggle a little bit. Now his smiles came spontaneously though and they were all we needed to keep us marching into the next day, He took his time deciding to join us, He was giving us the tutorial for raising him on his own terms, and in that, Mark was very clear. It was his life, and he would realize it on own time. It would take him three months to roll over, four months to truly recognize Steve and me, eight months to sit with support. His first spoken word was nih nih (night night) at eighteen months.
At two, Mark had a vocabulary repertoire of most of his peers, but he was using sign language instead of spoken words. He had a number of emerging verbal words, but relied on signing, as we did. This came easy to him and he used it diligently. Although Mark had been naming us with the signs for mama and daddy, we didn’t hear the words until he was a year old. His next real word was wah wah (water) at two years old; and, yes, I did sort of a secular all day novena to Annie Sullivan! Wah Wah. It held such joyous portent for his transition from a nonverbal to a verbal child. He knows! He knows!
**But waiting for Mark to grow was a challenge of faith. Some days were full of hopeless sobs and disappointment. On others, we went about daily business as if he wasn’t even sleeping in the living room. Developmental Delays began to take on meaning. We massaged him, took him out with us, kept stimulation up even if he didn’t respond.
Eventually, we moved him into his own room. We had a child at two, who was not crawling or talking, but signing over 100 words, was barely crawling, had very few teeth, was too small to even balance on a potty chair. The Infant Stimulation therapists were working his muscles to improve tone and strength, adding new signs constantly, working on fine motor skills so he could use a spoon and fork. Basically, anything most kids learn as a matter of fact, kept Mark dependent on this intensive prep time mentally and physically to just continue developing at our expected pace. The fact is, Mark would continue growing at his own pace, even if we left him alone. But “studies” showed marked improvement in developmental gains with early intervention. What parent would say no to that? Every move we made with Mark was in lesson or practice mode. Every task was brainstormed until we found the best way to teach him tasks or elicit social skills. If Mark’s maker had intended for him to be an example of a slow learner, we were exacting a monstrous heresy. Two days a week, we engaged marvelous Sisters of the Oath to come and work Mark’s body and brain. In the evenings and weekends we followed through with our homework assignments. Was over stimulation possible? We worried. Mark wouldn’t nap on his own. He would be exhausted and still refuse to sleep. Either Steve or me had to lay down with him, read or tell him stories before Sparkie would finally relax and sleep. We balked at this indulgence at first, but later we agreed to take turns because the naps were so priceless to our own sanity... The next part get's interesting... stay tuned
The next few entries are going to really get into the meat of our experiences and to be honest get a little tough to chew on. Be ready...