RE: At what age?

[Guest guest]

I hope someone has some great advice for you.

We have a son with autism and I can't even disconnect for a short

playdate. I have to call to see how he is!

Take care,

J

At what age?

I hope some of you here can give me some advice. My son, , is

11-years-old &

has been active in cub scouting for the past 4 years. During this time,

has been

able to do everything all the rest of the scouts did, including camping

(parents go with

scouts), because cub scouts is very family oriented. He just crossed

over from cub scouts

to boy scouts, where the focus shifts from the family's responsibility

to the boy's

responsibility. Parents do not typically go camping with the scout, but

's new

troop is aware of his medical needs & will allow one of us to camp with

him. The problem

is these campouts are more frequent (one a month), the trips are further

away (some out

of state), and tend to be longer than ones we did in cub scouts. Both

my husband & I

work, and we have 2 other kids, ages 4, and 1. We cannot go on trips

every month, and if

doesn't go, he will fall way behind in attaining his scout ranks

(if he is able to

attain them at all). These are the reasons needs one of us to

go with him:

1) He is on continuous feedings 8 hours during the day & 8.5 hours at

night (a total of

16.5 hours/day). He uses a Zevex Enteralite feeding pump. is

able to connect/

disconnect himself & start/stop his feeding pump, but he has never

actually set the

feeding bag up. I am almost positive he would not be able to pour 3

cans in the bag

without spilling it all over the place, and I think he would also have

trouble getting the air

out of the bag. I think he could learn how to load the bag into the

feeding pump though.

Does anyone else have children on continuous feedings who can totally

take care of their

own needs in regard to this? If so, at what age were your children able

to do this? Another

dilemma I have is the need for the pump to be plugged in to charge.

Most, if not all of the

campsites they go to, are primitive with no electricity. When we wet

camping with cub

scouts, he was only on continuous feeds at night, and the trips were not

as long, so the

pump lasted long enough before we needed to plug it back in.

2) He wears a back brace for kyphosis & scoliosis and needs help putting

this on tight

enough. can get in & out of his brace easy enough, but he

cannot fasten &

tighten the straps, as they are behind his back. I could teach this to

his scoutmaster easy

enough, but because his underwear goes on over the brace, he needs to do

this with his

pants down. I don't think either he or the scoutmaster would be too

comfortable with this.

3) He takes several medications, including growth hormone (which needs

to be

refrigerated) & Lupron. I am confident that could take his

medication (pills) on

his own, but he has never given himself a GH injection. We use the Cool

Click, and I have

asked him several times recently if he wants to do it, and he does not.

I think he is scared

he will do it wrong, and frankly, so am I. If you don't hold the Cool

Click at just the right

angle when you push it, the medication leaks & does not go in. As far as

the refrigeration

goes, I guess it is possible to keep the GH in a cooler with ice for the

duration of the trip.

For those of you who have children with similar needs & are

self-sufficient, I would love to

get some advice from you! Am I just being a neurotic mom, or do I have

cause for

concern? I really want to start letting go (hard to do because I am

somewhat of a control

freak) and give him more responsibility in taking care of his needs.

I'd also like to see him

stay in scouting & keep up with the othe boys. Suggestions?????

Kim C.

_____