Reality Check why LITE House is so Important
We've talked about two reasons why LITE House is so important:
Collin and his peers deserve to live a fulfilling life, which is made up of fulfilling days. This is difficult (impossible) for us to facilitate during the weekdays because we both work at other jobs. We need more help in order to help them.
Collin and his peers need a permanent solution, which will continue to provide support as we slow down with age and eventually aren't here anymore.
I recently had a great reminder for how important this is. (Not a health scare, thankfully - it was a work event.)
After making great progress in late summer towards getting this organization started, my office had to let one of my colleagues go - and I had to pick up his projects on top of my own. Suddenly, overnight, I became extremely busy and had to work long hours each week. This happened on September 20th (right after we set our target date for 1/1/25), and I am just now getting my head back above water.
For two months I was minimally available, especially during the week, and the negative impacts were like dominos.
Collin didn't get to spend time with me doing the fun things we usually do together.
Cheryl became Collin's primary (or only) caregiver and facilitator.
This meant she had close to zero free time for two months.
This also made the "What happens if something happens to Cheryl?" scenario seem very real. Something as simple as a cold would have negatively impacted Collin; anything more serious and I'm not sure how we could have handled it.
Collin and I had been training together on typing (Spell to Communicate); now we've lost the momentum we had built and we need to start again.
This was a good reality check. We are not prepared for something to happen to Cheryl or myself - whether it's an unexpected emergency or a slow deterioration of ability as we age. Chatting with parents of Collin's peers tells us most other families are in a similar situation.
The need for LITE House is more important, and more apparent, than ever.