Yesterday I read a Facebook post from another mother with a son on the autism spectrum. Her son is also nonverbal and struggles with sleeping through the night, among a few other common autism traits.
Her son just turned five-years-old and begins kindergarten in the next few days.
The mother is fearful and anxious about sending her nonverbal child to school.
I reassured her. I explained about the communication notebook going back and forth from home to school. I told her the teacher most likely has an email address for bigger conversations and for urgent situations she can call the school.
I was calm as a cucumber, explaining the ins and outs of non-verbal school tips.
However, as a veteran mom of a nonverbal, autistic child, I can attest to the ongoing fears and concerns we mothers have for our nonverbal children with nonfunctional communication systems.
Not just when the enter the school system, but over the course of their life.
Every time you leave your child with a new person you worry. You worry because it takes time to understand your child’s nonverbal cues. The pointed gazes, the specific body language, the vocalizations that don’t mean anything to anyone except him (and you). You worry if his needs will be met. You worry if the person will take care of him. You worry about any new mark you notice on his body.
How did that happen? Was it an accident? Did someone intentionally hurt you? Is it someone we trust? A teacher, caregiver, therapist? The bus driver? Have they betrayed us, our trust?
For us, it really didn’t get much easier with age. Speech therapy, iPads, PECS, sign language, augmentative communication devices – none of them have proven to be an effective means of communication over time for us. Pushing, pulling, gazing and grabbing at objects are the chosen methods of communication for my son, these are all common ways of communicating for nonverbal children (see tips for communicating here).
He does make choices using a communication app on his iPad. We use Proloquo2go. He won’t bring us the iPad and tell us what he wants, but if we give him choices he will point to what he wants. However, he much prefers to use it as an entertainment device.
Yesterday we sent him to camp for the first time, for a week. For the first time in a long time he will be trying something completely new with people who have never met him, without me as an easily accessible resource.
He does not have access to his iPad. I struggled with this decision, but in the end I decided not to let him have it – even though he MAY use it for communication. I fear that he will only want it for entertainment and if he does, it will interfere with his camp experience, as well as the other campers.
So, I left it as an emergency option. If he really struggles with the new environment it can be used to soothe him. I hope this isn’t the case.
Although it doesn’t get much easier, the worrying never really ends, I have learned to cope a little bit better. I have learned to shut down that part of my brain that whispers “what if?”
What if no one can figure out what he needs?
What if he wanders off?
What if he gets sick?
What if he chokes on something?
What if he has a seizure?
What if someone abuses him?
I mentally shut myself down and don’t allow myself to focus on it.
To some degree, I have to trust. It gives me a little space to experience my own life for a moment. I learned to do this when I started sending him to the children’s respite home for long weekends.
This does NOT mean I am not vigilant about his health and safety and I don’t plan for the future. Of course I do these things.
It means I’ve learned to breathe a little, just a little, but enough to focus on me, my husband, and my daughter. Enough to call a friend, go out for dinner, watch a movie , offer advice to a friend, recharge my spirit…
Do you have a nonverbal child? Please share your tips with us.