My husband and I come from a large extended family of gregarious talkers, so there is never a lack of conversation whenever all of us get together. Our gatherings are fun, often spirited, and memorable, with the time spent going much too quickly. It took Brian a long time to be comfortable with these extended family paloozas. Even today, Brian still needs his space to adapt to a family party, for walking into a crowded room is too overwhelming. It’s always better if we arrive first, greeting relatives as they enter, one at a time. The same holds true on our own home turf: Brian will find a comfortable space and prefers if you come to him. In the early years, we often had to leave various places due to the sensory overload of people and unfamiliar surroundings. Sounds and sights during that time were just too much for Brian to process. We would leave these events feeling sad and isolated, wondering if it would ever be possible to be our gregarious selves again or if it was our fate to remain contained within the walls of our home. I often thought it was an especially cruel blow for Brian that he could not speak and tell us what was on his mind, unlike the rest of us spirited conversationalists in the family.
I still wish I could hear my son speak, even today, and often dream about it vividly…..In my dreams, Brian and I have had these amazing conversations , covering various topics of interest. I am flabbergasted by Brian’s insights, his astute observations of people, places, and things. He has preferences, opinions, passions, and dislikes, and has no problem expressing them. He has hopes for today and tomorrow, as well as plans for his future. He loves his family, school, and community activities and assures me that everything is and will continue to be OK. He looks deeply into my eyes with a knowing stare and says: “You worry too much, Mom!” I agree: “Yes, Son, you are right. I try not to worry so much. I think most of the time I take things in my stride, but sometimes, I just get so overwhelmed. You go through a lot and at times I feel so helpless, as I can’t always make things better. That is so hard for a parent . That is the nature of motherhood and the price of love.” Brian gives me one of his reassuring, “death grip” hugs, then suddenly the dream is over, leaving me to wonder long afterwards if perhaps all of this really happened after all….
Anything is certainly possible, so maybe Brian will acquire more language over time. He does say “Mom” and “Dad” now, and this only happened in the past year. I can see Brian positioning his mouth, trying to the imitate sounds that we make. However, apraxia makes this goal very difficult; the disconnect between the brain and oral motor functions is like trying to climb a mountain without the proper gear. Still, I am hopeful of what we may hear Brian say one day in the future. The fact that he could finally utter two of the most important words in the world was a miracle. I am very realistic though, and don’t expect Brian to engage in a conversation, but some words here and there over time would be wonderful. It would especially come in handy when Brian is in distress or sick, like he has been this past week. We don’t always know at first what is bothering him and often have to go by body language and other signs to reach a conclusion or diagnosis. This can be frustrating for everyone concerned and adds to the angst and exhaustion that we all feel.
While we don’t always know what Brian is thinking, I am grateful that there are tools for non-verbal kids to express themselves with, such as Picture Exchange Communication (PECs), sign language, and various speech apps. Brian does use a speech app called “Proloquo “ on his iPad to communicate his wants and needs. There is no perfect system and each one has its pros and cons, but these resources do give us an insight as to what Brian is thinking about at times and have helped him to initiate “conversation”. It is our hope that Brian will continue to expand his vocabulary with Proloquo, and become more spontaneous in using it. Who knows, perhaps there will be new means of augmentative communication in the future that will increase both receptive and expressive language in a totally different way. You just never know and I like to remain hopeful of what could be, not only in communication, but in all facets of Brian’s life.
Being engaged with the community also involves communication, so in addition to an augmentative communication device, Brian also carries a Velcro wallet with a “student picture ID” card that lists his home address and my cell phone number. This tells people who Brian is and who to contact, should Brian ever get separated from us. I shudder to even entertain this thought, but things can and do unfortunately happen. Brian is learning to show his ID when asked his name, and is making food purchases at his school cafe with a few dollars each day. Brian also has a name badge that he will use starting next month at a local pizzeria where he will distribute take out menus to customers a few hours a week. My husband and I are excited for Brian to have opportunities like these to engage with others by any means of communication available that will accomplish this goal. I believe such experiences will expand Brian’s communication opportunities and hopefully encourages him to be more self -motivated with expressing himself over time, with LOTS of practice, of course!
I’m glad that Brian will always have different ways of communicating and engaging with others, otherwise his world would be a very lonely place. Regardless of these opportunities, I still look forward to the day when my dreams of conversing with Brian will come true, in all of their wonderful, extraordinary detail! We will have so much to talk about! I suppose that is exactly why eternity is necessary, because time restrictions won’t work for us. All of the unspoken words, or times that I wondered exactly what Brian was thinking or feeling will be revealed! How amazing that will be! I’m sure Brian’s first words will be: “See, Mom! I told you everything was going to be OK! Now can I play on my iPad?” 🤣🤣
Until next time, thanks for reading! 😊