The Space Between
Communicating with a special needs child: handle with care
Cars are swerving around you, some honking at or near you, the temperature outside at 6 pm is hotter in this Texas heat that it was 2 hours ago, the day has been long and dinner waits at home to be cooked, the bathtub for the 3 year old sits waiting to be filled with bubbles and your mind is aching with the things you haven’t had time yet to do.
Sitting at yet another red light on Manchaca Rd, I wonder in all the chaos how I will get everything done and still have time to get 8 or even 6 hours of sleep.
The mind of the child I tend to
Suddenly I become aware that the mentioned 3 year old in the back carseat, while consistently kicking his feet on the backseat, has been repeating the same short, mostly unintelligible sentence for the past 4 minutes while I was in my head.
I look in the rear view mirror and catch a glimpse of the anxious look on his face and feel remorse for not attending to his attempt at communication earlier.
He is a few seconds away from an end of day meltdown, along with my own, and he needs some positive sensory input to deter the meltdown.
It’s all I can do to answer the question he’s asking when I can’t understand what he wants amid all the noise and frustration.
Just as I am about to utter a mildly unempathetic response such as, “Can you be quiet, Charlie,” or “Wait ‘til we get home” I see the distinct fleeting look on his face of an unspoken cry of desperation to be understood and attended to.
It’s so quick that it’s almost invisible. But I see it and see it often…when he is focused on a particular toy in the morning as I am trying to get him to Playschool on time, but simply instructing him to lay the toy down ushers in an all-out racing around the house tantrum…
Or when a lot of family conversation and activity is occurring in the home at the same time and he struggles to be included and so acts out to gain attention to himself in an effort to find his place in the group…
Or when he cannot nap and he is so tired that his brain interprets fatigue delirium as excess energy and he runs and screams excessively, gritting his teeth and exhibiting such overdrive that he is visibly suffering.
He is just asking for help and patience, love and time in that very momentary outreach seen in his countenance.
Recognizing the alternate way he operates
Slight, but overt differences in his movements, thought processes, pain responses and noticeable sensory needs and deficits delineate him as a very different child than average.
He often works diligently to get a word or a thought out and it’s obvious at times that he is aware that there is an outward expression on his face noticeable to others that he is struggling. When he senses this, he shuts down.
So, incredibly, he is aware of the need to practice a thing to master it, but is also aware that the outward effort to do so appears to be an anomaly to those watching him in his efforts.
And he does not yet have a resolve for that.
I respond by encouraging him to complete his thought and praise him for using new words and concepts, which is what the struggle derives from.
Not one of the 4 children I raised before Charlie had any issues with communication. They could be soothed with normal gestures and could infer, even at young ages, when “enough was enough” with Mom, and could readily transition from one action to the next without disorientation, confusion or abnormal resistance.
Raising Charlie has been a completely new and different experience from my previous single parenting.
I have had to slow down to Charlie’s pace to look him in the eye and speak purposefully and eloquently to and with him so that he not only understands the words, but also the concepts, tone, and urgency of them.
He is highly intelligent and confers ideas that constantly amaze me and makes me proud of him . His intelligence so contradicts the developmental delays and alternative neurological functions with which he is diagnosed.
So small, the span of a second… are those moments when he cries out through a countenance that reveals the struggle within him to understand and to be understood, but they are the central key to his knowing I care, for his developing and sustaining trust in me, and they are the opportunities for the confirmation and extension of my love for him.
So, lots of time, otherwise lived at my leisure, is retracted from my own would be life and is instead spent in our intimate interactions.
His ability to understand so many concepts is incredible. It is a true gift that deters other caregivers in his life from understanding the depth and complexities of Charlie’s diagnoses.
This is how Charlie processes relationships, utilizes communication, and why I can never take my eyes off of him.
Charlie understands that there is “togetherness” in life expressed in one way as coupleism (my children and their significant others). In the processing of and relating to this idea, he regularly names off everyone in the family along with their significant other…seemingly to etch into his mind the understanding of his familial support and the fact the people and things “go together.”
He remembers everything he sees or hears and frightens me at times with details of memories of events occurring more than 1–2 years ago. He just turned 3.
It is well known that 2–3 year olds do not like the word “No.” With Charlie, this word triggers something seemingly sinister deep inside.
The unruly behaviour in demanding to get his own way would in times past be dealt with a smack to the diapered bottom by a parent and perhaps would settle the matter…but not with a special needs child. And not with Charlie.
Discipline has been a dark and obtrusive area as it has been unclear how much Charlie understands that there are real boundaries that cannot be crossed and that there is behaviour that is not appropriate in any setting.
How do you appropriately discipline a child who does not understand danger and one who experienced prenatal and neonatal abuse?
A recent trip to the ocean proved to be quite exhausting and stressful as Charlie could not understand why he had to be held back from running headlong into deep water. Over and over and over again.
Another incident when he was 18 months occurred outside an isolated gas station that stood on the edge of a horribly busy interstate. Charlie and I had walked together into the adjoining convenience store and I held him as we came out to the car. He wanted his drink we had purchased and he wanted it “NOW!”
I let him know that he would get his drink after getting strapped into his carseat, but that information did not suffice. As I set him down, holding his hand to open the car door, he jerked out of my grip and attempted to bolt directly into the interstate.
He did not get but a foot away from me as I dropped everything in my hand and grabbed him from behind, but I almost had an instant fatal heart attack experiencing that. And he was not done.
One entire hour of shrill, high pitched screaming, spitting and kicking ensued after he was strapped into the carseat and as I attempted to drive home with a grain of sanity. His drink sat in his cup holder next to him, but now he was not focused on possessing it. He was focused on the disappointment of not having the drink at the exact moment he wanted it. He was out of sorts.
I got that.
His desire to keep his prize, his drink, in his hand (which he saw as an accomplishment we had made in the store together) had to come second to the accommodation of his safety and the process of getting him into the car, but that was a transition, and transitions were very difficult for him then and remain a common issue today.
I cried while he screamed. No redirection, instruction, or cajoling worked. He finally stopped and held his head down. He could not yet at that age and stage apologize, but his lowered head said it all.
This was one of those times I understood that there are innate rages and responses within him that come out and even as he would like to stop from exhibiting them…he can’t.
It just makes me love him more to know that he is in such need of understanding. And that he IS intelligent and cognizant enough to understand such behavior has consequences and hurts him and others.
Redirection is very helpful in many day to day interactions, but there are concepts Charlie does not yet understand nor process as a non special needs child would and conventional warnings and explanations do not warrant understanding or compliance on his part.
Only recently have I been able to confirm that he does indeed understand the expectations of some social norms, as he has settled quite comfortably into the routine of a Montessori school without serious issues.
Montessori thinking lets the child lead, which fosters independence, and accountability. The very structured environment has done him a world of good and he now has fast friendships and transitions from one activity or thought process to another without as much difficulty as the previous 2 and a half years.
I have concluded that although the diagnosis for FASD and developmental delay/others are apparent in day to day behaviors, Charlie also possesses and uses, an affinity for manipulation in relationships.
This weekend, Charlie’s aunt was attempting to quieten him down in the car, as she and I were driving around town. She is a reliable and consistent helper in our lives and Charlie absolutely adores her.
He did not like her interference and interjections about his behavior. As it was becoming dark outside, Charlie was aware that we could not see him as well from the backseat.
All of a sudden as we were driving, we heard a slapping sound several times from the backseat, and though Charlie asked each time what the noise was, he also stated “Someone is hitting me.”
“What that noise? Someone hitting me.”
My daughter and I looked at each other, actually frightened, as if perhaps we had missed a supernatural phenomenon, such as an abusive ghostly spirit, hiding under a car seat who was hitting Charlie. (Stupid, but this was intensely disturbing.)
Charlie sat, looking bewildered,…or so we thought.
Although we had turned to see where the noise was coming from several times and saw nothing, we both turned simultaneously one last time from the front seats we were sitting in, to determine where this bizarre problem was originating only to catch Charlie in mid slap to his own leg.
At which point, Charlie confidently and without guilt conceded that his aunt who was not physically close enough to commit the accused crime, was the one slapping his leg.
We just looked at each other and nervously laughed and wondered at the prospect of this child who has so many diverse issues, having the capability to purposefully misconstrue a situation in an effort to lay blame on someone…and all because that person was addressing his inappropriate behavior, redirecting him from an earlier tantrum.
These are the incidences that make me rethink Charlie’s strengths, weaknesses and potential, which I have always held would be a thing to blossom tremendously, if he was attended to properly and lovingly.
And how did I handle this situation? Not with direct negative correction. We smiled and stated to him that his aunt was not the one who had slapped his leg, as he knew, and that he could just tell us how he felt, instead of trying to get someone in trouble.
Oddly enough, he got that.
With a smirk.
My sentiment on the situation
I feel so honored to have the privilege and joy of raising this special needs child. I am so appreciative that we are able to be unrushed and unhurried in our healing journey.
We hug a little longer than most, dissect an idea a little deeper than many, and we do everything we do very deliberately so as to retrace words, meanings, and actions into a sensitive place in his brain that gently and slowly processes the sensorial information as we introduce it.
Having the time to see into a child’s heart and mind and connect with them spiritually is a rarity and is something precious beyond words.
Even with the intimacies of homeschooling my previous 4 children, the need for me to simultaneously work full-time, prevented my capturing near as many of those kind of moments that I wanted so badly.
This loss was the very source of my guilt as a single mother.
Through Charlie, these have been restored to me.
With all of the nuances and strange challenges of rearing this wonderful special needs child, what he and I do comprehend together is our rare kind of bond created by the love between us.
The words he speaks each night at bedtime after we have read our bedtime story and snuggled, cleanse each day and any frustration.
“I lub you mommee”…“I lub you.”
And Oh, how I love you too, Charlie.