Early, early in the morning, long before the sun comes up, my conscious self takes hold of the sleeping self and wakes me. This usually happens, after a good night’s sleep at about 4:30 to 5:00 a.m. I slip out of bed shortly after 5 a.m.
My son is sound asleep at this hour and it will be the only part of my day in which I can accomplish anything outside of his presence. I do it so I can have time to myself. As horrible as it is to get up this early, I need to do this. I check on him to make sure he is safe and hobble off to exercise, do chores, and make myself as presentable as possible, before I return to wake him and begin his day.
By the time I return to where he lies sleeping, he is usually still asleep. He is so beautiful and cuddly when he is sleeping. I almost always wake him with kisses. He smiles, stretches and opens his eyes. There was one time in which he said, “Good morning, mommy” without me prompting him. But, regularly, we begin the day with some echolalia. The phrase of the week is usually what comes streaming out.
Yesterday morning it was, “What does Blue’s Clue’s say?” which meant, “Mommy, make the Blue barking sound.” We usually get through about three phrases and I will tell him, “Good morning,” and wait for him to say it back. Probably 70% of the time, I do not get an answer. The remaining 30% is what I live for. The small moments when he says, “Good morning, mommy” in return.
Usually, there are several hugs and kisses involved in our morning rituals. Hugs and kisses for letting me brush his teeth without protest; for using the potty; for getting dressed and letting me comb his hair. Each of these is a task which requires effort that is rewarded with that strong hug and kiss, the kind of love he seeks for his senses.
As we are getting ready to leave, he often follows me like a duckling after its mama. He sometimes expresses worry that I might leave without him. He will, if anxious enough, go out to the car and start to point at it and say, “Open the door!” to assure he will not be left behind.
Inside the car, he has trouble with his seatbelt on occasion. During the summer, he has no problems. In winter, with all the bulk I apply to his body to keep it warm, I must sometimes help get the seatbeat on as it is a tight fit and I have to loosen and adjust. Again, he does not ask for seatbelt help. He will swear, “Fire truck!” or “Krabby Patty!” to get my help. The words just don’t come easy. After the verbal correction and request for repeat, I usually steal one more kiss.
On the road, he plays quietly or engages in echolalia if he is not trying to bluff me about a trip somewhere he doesn’t really want to go (see here). The only “normal” conversation exchanged between us on these rides is if he asks for his cup of water, which I place in a cup holder up front, to avoid spilling. “Want water. May I please have the water please?” (extra polite). The other “conversation” is usually, “You’re going to?” or “We’re going to?” to determine where he is going to for the morning, even though I’ve already told him the schedule during our morning, ‘getting ready’ routine. The rest is echolalia or requests that I repeat certain sounds or phrases.
Sometimes, on that ride down, aside from the hundreds of other mundane thoughts about tasks I need to complete, I wonder what it would be like if he was neuro-typical. I wonder what kind of conversations we would have. What would he point out to me and what would learn about his likes or dislikes? Would he tell me to look at the horses or ponies that are sometimes grazing in the fields we pass? Would he show me an odd car or truck? Would he tell me what he wants to do versus doing what he does because these are choices that have been made for him.
I think about what it would be like if he told me about something that happened to him at school the day before or about something he’d like to do after school that day. I wonder what happens inside his head as we make our way down the hill, what he sees, how he sees it and remembers it and what emotions he attaches to the visual parts of his ride.
And then I wonder that if he was able to tell me all those things, would he be someone else or would he still be my little boy? The one who I kiss each morning and sneak glances at all through our ride down the hill. The little boy who will sometimes, in silence, without prompting say, “I love you mommy.” The little boy who dances to music from a toy.
In my heart, I think I know that if the communication was there, my son would be someone different. His personality would be changed. Would it be just the bad parts? The parts where he is frustrated and angry because he cannot get the words out? The parts where he cannot tell me something that is bothering him or something that he wants to know more about because he does not know the words to ask me?
Or would I lose the good parts? The unsolicited “I love yous”. The kisses for the sensory input to his face and lips. The deep pressure hugs that he gets and gives. The beauty in his laugh over something no one else understands. Because I would never want to lose these parts of my child. They are beautiful and they are my son.
As he grows, I am amazed at the progress he is making in communicating his needs. I am surprised by the development of his sentences. There is so much joy in things that “regular” kids do naturally. Things that come so hard for him. I often reflect on how unfair it is that he has to work at something that should be as simple as breathing. At the same time, I am grateful beyond expression, that he does the work and is making progress toward “normal.”
I gauge his progress by what is considered “normal” yet at the same time, ironically, I am not even close to needing him to get there. I love who he is now. How he smiles and laughs, never sits still, plays differently with his toys. How he sings and reads and eats. Most of all, I love how he loves me and how I love him. With our whole hearts and with no disability between us. He is my perfect little boy.