Digital Connections, Real Life, and Sunshine
Just a Few Words, Lots of Action

Charlie Rides the Bus Home

Charlie and Jim on a post-bus bike ride  A little yellow schoolbus of a familiar sort pulled up in front of our house around 3.18pm yesterday. The door opened and I went and said hello to the driver and the bus aide and saw Charlie taking off his seatbelt. 

It was his first day taking the bus home and it went well, aside from a little initial confusion when Charlie found himself being directed to get on the bus, and no sign of the white car. His teachers have been reading a social story about 'taking the bus home' to him for the past week, and we have been reading a copy that was sent home, too. I sent in some special worry beads (from our friends Emma and Dimitri in Athens) for Charlie to hang onto only when he rides the bus. The bus driver and aide (who'd been expecting to drive Charlie home since ESY started in early July) had been instructed about how best to communicate with Charlie. (Not over-doing the language, using straight-to-the point sort of sentences.)

He had a very serious look on his face when he came inside. Jim gave him a high-5 and asked if he'd like a bike ride; Charlie said an automatic 'yes' and they were soon off. Charlie was, Jim noted, very 'reflective' on the ride.

Truly, I think it's how all three of us felt. 

Charlie has certainly taken the bus home from school in the past, even when he was much younger. I still remember the first time we put him on a school bus back in June of 2001, when we were living in a sprawling central Jersey town. We had only just left St. Louis a few weeks before; we had moved back to New Jersey hoping that here might be be a school for Charlie to attend. The bus was the same sort of little yellow one that pulled up in front of our house Tuesday afternoon; while Charlie was the only child on the bus yesterday, the one he'd first ridden was packed with children (almost all on the autism spectrum) and did not have an aide. The bus driver, Mr. Richard, was a very good guy. Charlie had gotten into a seat by the window and  Jim had buckled him in and then, as we both stood below the window looking up at Charlie while he looked down with an expression of (not unsurprisingly) incredulousness, Jim said words to the effect of

And so begins his school career

and many more bus rides to follow.

At the moment, we had no idea of the twists and turns and bumps that have characterized Charlie's path through school these past 9 years; that it would get to the point when we hesitated to have him ride the bus. The ride from the Big Autism Center to our house calls for driving on the interstate and takes at least (without traffic and stopping to drop off other kids) 35 minutes (when traveling at a fairly fast speed). Charlie was having so many behavior issues when he started at the BAC that the bus simply was not an option. But since an at times shaky start in November, things have been good and it seemed right to let go, a little. 

I would think that Charlie missed the coziness of the car and the stops here and there for snacks and sodas. The schedule his teacher showed him indicated that snacks, and bike rides and/or walks, were to be had once home, a little delayed gratification. Jim and I are going to miss the full-hearted feeling of driving up to the BAC in the afternoon and seeing all the kids and teachers and, too, that coziness.

But as oft stated, we're not going to be around forever and Charlie needs to learn to have others do things for him. He may have a more 'eventful' ride in days to come on the bus (yes, the drive has both of our cell numbers and we have that of the bus driver), but over time I think he can manage the ride; can manage a little more independence, within carefully drawn lines. So is Charlie taking the bus home one small step into his future.

Jim and I took some other steps ourselves with a view to this yesterday. While Charlie was at school, we had an appointment with our lawyer (he's part of a well-known New Jersey practice that handles many cases for families with children with disabilities), to talk about a Special Needs Trust, our will---to start making provisions of a legal and financial sort for Charlie as an adult (it will happen soon; it was only yesterday I was waving good-bye to that chubby-cheeked preschooler on the first yellow school bus); for when Jim and I are not here.

Stomach thud at the thought

Reading this sad story about a mother in the UK and her disabled daughter---it seems the mother died of natural causes and then, without anyone to feed her, so did her daughter, who had multiple disabilities since birth and was in a wheelchair----and thinking about Bryan Nevins whose careworker has been charged with a felony after leaving him in a locked, parked minivan two Saturdays ago---there is a lot to do; that goes without saying. Jim and I have started to make plans and preparations. Getting the Special Needs Trust together was at the top of the list.

In talking to the lawyer, we learned that Charlie can have no more than $2000 in assets in his own name in order to qualify for federal programs such as Social Security and Medicaid. We asked about guardianship and learned that, 3 to 6 months prior to Charlie turning 18, we should consult with the lawyer to get that process going. We talked about who's going to be the executor of our will, who has power of attorney, who might receive any funds left in a trust for Charlie should he himself pass on.

I know, just a little 'light stuff' for your summer reading.

I'm glad to go out of way and even over the top to get things set up for Charlie. We did for him to ride the bus home. Jim and I always feel our share of self-doubt about what we're doing, though I actually think this is healthy. Figuring things out for Charlie has always been a journey with an almost-blank map. It does make a huge difference to make such over-careful preparations. I'm going to wager that it helps Charlie too. 

Charlie rode the bus home Tuesday. There will be many more rides for him without us, and we want him to know, as much as might be possible, that we're always there with him, that we're thinking of him, looking out for him. Loving him.



Yes, your approach is much better than mine, which ia plan to live forever.

Kristina Chew

Actually, I was thinking of doing that too.


Chills! This light summer reading swells the heart with pride (bus) and the brain with practicality (lawyer).
Wonderful for son (growing independence) and parents (peace of mind).


Ours is done, did it in the spring - yes, I know he's only 8. We have the trust in our will that should something happen to us the trustees take over for our younger son and are guardians for both. We are allowed $5,000 (may have changed last budget??) to get social services.

The rest we were told to wait until just before he turned 18.

Finding someone you trust is hard... we didn't pick any of our siblings either. I'm just pleased that those we asked, agreed.

I plan on having mine in care, or some form thereof depending on where we are at 21... Will probably start planning before that. I have no intentions of having him here when I cannot care for him and I too am entitled to have him leave the home. NOT, that I probably won't check on him most days... but so he's safe and protected should something happen to us.

Congrats on the bus. We've been taking it since K.. next year he goes to a new school.... hopefully by bus and not cab... and I too will follow it out the first couple of days to make certain the transfer goes well. So far he knows he's going to town to school not the village.. but... the Mom needs to see it for herself.


You and Jim deserve kudos for planning so well for Charlie's future. It's not easy to think of leaving our children to navigate the world without our assistance but we should take care of these things now to avoid extra work for them (or their caregivers) when we're not there to help them.
My husband and I are both attorneys and we didn't make our wills until three years ago! We were being ostriches, burying our heads in the sand, and in that we certainly not alone but we owed it to our children to face things and smooth the way for them. Our two boys are older now and capable of making good financial decisions but our daughter is only 16 and still at the point where a sudden windfall would lead to the immediate purchase of a sports car, a trip around the world and the acquisition of the entire contents of the local Sephora. Now, at least, she'll have to wait until she's more mature to make big financial decisions should her father and I die untimely deaths.
I hope Charlie's bus rides continue to be smooth. Is there any way he can have a spacial snack to be eaten on the bus? it might make up for the missed convenience store stops.

Kristina Chew

Thank you----honestly, I didn't know how to fill out a tax form until my 20s!

Alas, no eating on the bus. It's as well as most of the things Charlie would like to eat require refrigeration or being heated up in the microwave. Certainly something to look forward to at home (and now I've a bit of extra time to make a fast run to the grocery store).


So much richness in this one post! Many kudos to Charlie for his successful bus ride and to you and Jim for tackling the task which Niksdad and I have yet to tackle. It always feels like you have forever to accomplish something...until you don't. *ahem* Will be working on that after we get Nik into school.

Kristina Chew

It's been a couple of years that people have said to us we had to get to work on a Special Needs Trust. We kept saying 'yes yes' and then finally Jim called the lawyer and we did it. We did the will years ago (when we lived in Minnesota---a long time ago indeed!) but some changes needed to be made. And goes without saying it's never too early to think about Charlie's future.

Bonnie Sayers (autismfamily)

Here in California it is a conservatorship we need to do a few months before turning 18. I believe this is the only state that has something different.

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