After doing this mothering stuff (and this autism mothering stuff) for this long, I’ve come to appreciate words – spoken words, written words, and most of all, communicative words. When Amal was born, my husband and I prayed for her to talk so much that it would drive us crazy. (God answered that prayer in multitude.) At that point, Lil D still wasn’t talking outside of a few words and babbling, and he had no communication system in place to let us know the most minimal of his wants and needs.
Nine years later, you can look at Lil D and think two things – that he hasn’t changed much, because outside of a few precious words, he still mainly makes noises. In fact, the frustrating thing to me is back when we were teaching him echolalic speech (repetitive speech) in the early years of applied behavior analysis therapy and verbal behavior therapy, his ability to repeat our words was much stronger. His enunciation was much clearer. Now, not so much. His enunciation is quite muddled, and he has difficulty repeating (either physically or because of stubbornness) beyond two syllable words.
But on the other hand, after trying out numerous assisted communication devices over the year (something I held back on until he was nearly 8 years old because I was worried he would depend on the devices and stop trying to speak at all) – from PECS (picture-exchange communication systems) to a Go-Talk device to a ProxTalker – we are now one year into what I think is Lil D’s (Insha’Allah) long-term love affair with his current device – the iPad. He finally is finding his voice.
When the family banded together and helped us get Lil D’s iPad at the start of the last school year, I simultaneously was skeptical and had high hopes – would he be able to manage a touch screen? Would this be the device that he would use without us prompting him too?
It has become all of that, and I can only see the potential for communication growing.
This weekend, my husband was lounging on the sofa with Hamza, and Lil D came to him and started tugging on his hand. “What do you want?” his dad asked. After tugging on him some more, Lil D went to the kitchen where we always keep his iPad, got it, and brought it over to his dad. We brought up his Sounding Board app, and Lil D navigated the different boards, going back and forth until he found the one he wanted with the picture he was looking for.
He hit the photo of the fries. “I want french fries,” the app said.“Do you want fries?” his dad asked.
Lil D hit the “yes” icon on his phone. “Well then, put your shoes on and let’s get in the car!” We dropped everything, hustled Hamza into his sandals, put the boys in the car, drove to our nearest fast food joint and ordered some fries. Then we drove to a nearby lake and went and sat under the gazebo, enjoying Lil D, who was enjoying his fries.
It’s such a simple thing – the ability to express that he wants to eat French fries, or take a shower, or use (or not use) the toilet, or eat his dinner, or have a Kit Kat. Think of your child, who can express any of the thousands of things he wants or is feeling at the drop of a hat. The ability to communicate wants and needs, feelings, emotions, wellbeing is such a precious, precious gift.
To this day, outside of my constantly reading his nonverbal cues and body language, Lil D has never been able to “tell” me if he has a headache, if his stomach hurts, if he just feels sick. When he pushes his dinner away, I am constantly gauging his signals to see if I should insist that he eat some more, or if I should back off because maybe he really doesn’t feel well or is full.
How many times have I put him to bed not knowing that he is feeling nauseous, and I come into his room in the morning to wake him and find dried vomit on his pillow and in his hair. He doesn’t get up to come find me. He just endures his illness, throws up, and goes back to sleep. It makes me feel like the worst mother in the world every single time.
How many times has he balked at something I gave him to eat? His Sounding Board app gives him a few choices for meals, but it doesn’t begin to cover vast variety of Indian food I cook for the family. Amal and Hamza make requests all the time – Mamma, I want paratha (a type of Indian bread), not chawwal (rice). I want to eat palak, not palli (spinach, not green beans). Can you cook dupyaza (an onion-based curry) and white dahl (lentils) tonight?
I honor their requests sometimes, and other times, I say – nope, here is what I cooked, and you will be eating it. But Lil D, well, he is nowhere near making those types of requests yet. Poor guy – he eats (for the most part) what is put in front of him. By now, I know pretty well what he loves eating, what he doesn’t. Still, it is nowhere near the same.
So, these precious moments of communication, these requests for fries, for cookies, for water, shower, for dinner – they are very, very triumphant and celebrated. God only knows all that Lil D endures, all that he wants to say, all that we do right by him and all that we do wrong. I wonder all the time what Lil D will say to me when this world ends, and we meet in front of God.
I love you, Mamma. I forgive you, Mamma. You did your best, Mamma. I was happy, Mamma. You did understand me, Mamma. I wasn’t silent, Mamma.
I hope …