My Nonprofit Reviews

Both my wife and I wanted to extend a word of thanks regarding the Chatter Matters Camp our family was able to enjoy this week. The brief opportunities to share our gratitude kind of took us by surprise - as I'm sure it did for other families as well. It was tough to process the amount we have to be thankful for during that short amount of time. Here are a few thoughts...

Life as a special needs parent, by necessity, can be quite regimented. Daily rituals get us through each day, and work and sleep deprivation take their toll. Even a vacation isn't a vacation, as they are often largely the same regimen in a new location - plus a degree of uncertainty with regard to new locations, new hospitals, new stares, etc. The opportunities to really sit back and reflect, plan, and course-correct rarely come, and is often done with 'the ball in motion', and some degree of fatigue.

The Chatter Matters Camp was beneficial to us in many incalculable ways. The opportunity to have our son's needs given a fresh review by so many speech professionals was priceless for him, and reassuring for us. Our eight year old son's speech began with his first word nearly two years ago to the day. The long plateaus between any progress in speech always make us concerned about committing extended lengths of time to try anything new. We see the benefit that this technology can provide Brandon, and I'm not confident that would have happened without this camp.

The opportunity to be with other special needs parents also helped us out of our years-long sense of isolation. What made this camp particularly helpful was the shared experience of specifically being with the parents of children with extreme communication disabilities. We don't feel as isolated as our children who can't talk, but we share that sense of isolation the same. It was a tremendous experience to be among those who 'get it' - both professionally and in their daily home life as well - and to have that opportunity have some community.

Safety - a long forgotten sense of safety. Our son never responds when he wanders off, which always leaves us anxious wherever we go. The speech professionals, the speech students, the community of families (both the siblings and parents), the predictable and easily searchable facility layout - all made us feel safe for the first time outside of our home in a long time. The two times our son did wander off this week, it turned out he was simply escorted to the washroom by the volunteer psychologist, and another time he went back into our room, where an SLP was just patiently waiting outside the room with the door open, keeping a watchful I on him until we figured out he was missing. That was really ‘above and beyond’ the call of duty and greatly appreciated that.

The opportunity to be able to speak with a psychologist was beneficial as well. A fresh perspective that is experienced, objective, and insightful can be immensely helpful when parents and kids are caught in a regimented daily routine. We received some great, practical takeaways that we will use to help our son to cope more appropriately in new environments and new social situations that are over-stimulating to him.

The siblings were amazing as well. Our son easily gets overwhelmed in social situations and shuts down around regular kids playing at their own pace. We saw the face-hiding and withdrawal again with an opening soccer game. It only took a couple of words with these kids and they readily throttled down their intensity. Within the hour, we saw our son play soccer with kids nearly his own age for the first time ever. Indeed, it was the first time we saw him engage in a "non-parallel play" manner. We feel it was a defining, formative break-through moment for him!

As a parent of a speech-language pathology student who volunteered, the event was priceless as well. A university could not have created a more comprehensive pre-professional experience. Not only was the exposure to top-shelf SLPs a great opportunity, but they also received the experience of being able to dine and listen to parents, work with our kiddos, and interact with their siblings. Our daughter has already has this experience, but it is not the same until you can break out of your own family dynamic - so this benefitted her as well. The key difference between being a health care provider, and being a health care provider of excellence, begins a foundation of mercy. We feel that this comprehensive experience fosters the heart of a true caregiver enormously. For certain, the perspective made possible to these students during a formative period in their careers will pay dividends to the children and families they will serve in the future.

Oh, we could tell that our service dog, Sienna, enjoyed the week too. Our family routine has kept us from seeing the benefits of all her people-skills and training, so that was an unexpected discovery and bonus as well.

Finally, I have to mention the staff and environment of Inspiration Ministries. The meal planning, food preparation, the easy cleanup, the child-friendly environment; having all of these concerns and activities taken out of our routine for a few days provided us with opportunities to think, and regain some sense of adult community. There were moments where my wife and I actually spoke in complete, uninterrupted sentences. We already can't remember what we said, but it happened there!

So again, we have a lot to be grateful for and extend a sincere word of thanks to Variety for making the Chatter Matters Camp happen. As always, there are just too many individuals for us to thank. If forwarding this message is possible, we would greatly appreciate it. Thank you to all who made this past week, both possible and memorable.
Sincerely,

Jim, Anne, Victoria (Tori), Brandon, and Sienna Behan