[tri-med] Re: [tri-family] Re: having kids-a sib's thoughts

(I've shared this once before a while back,but thought I would share again in 
case some of you who haven't heard might be interested in a sib's perspective) 
 Being an adult sib of a tri-9er, I am very greatful to have a normal sib 
besides myself to help with Bruce now that my parents are getting older.  
My  tri-er brother Bruce also has the added problems of Tourettes syndrome 
"mads" and autism, along with some mild CP.  My mother, due in part I believe 
of the stress of having  and taking care of Bruce, also has MS. 
How to care for Bruce  weighed heavily on my mind when my mother was first 
diagnosed with MS. My father's health was not so good at that time either. I 
cried a lot and spent many a sleepless night worrying about how I was going to 
take care of them and my two toddlers. At that time, my "normal" brother Tim 
was away at college and it didn't seem that he could be of much help.  How was 
I going to come up with the $ 40,000 plus dollars it would cost to have someone 
take care of him in a good group home?- or even in my home for that matter. (he 
had already been on the waitng list for a group home for 22 years) How could I 
keep up with taking care of my two toddlers and help mom and dad? 
Plus there was the added problem that my youngest son was, and still is 
somewhat afraid of Bruce because of the unpredictability of his Tourettes 
"mads".  Add to that the fact that Bruce doesn't sleep but three hours a night. 
 When he's up he's loud and upset that he can't sleep.  Having him live with 
any of us on a full time basis is out of the question.  If he were calmer, it 
would be ok.  It would involve the extra work, the same work it takes with a 
toddler, but at least there could be peace. 
God took care of a lot of that for me.  He helped my mom to find a way to fight 
her progressive MS through diet and lifestyle changes and now she is in better 
health than when we were growing up.  It even improved my dad's and Bruce's 
health as well.  Her  MS diagnosis put Bruce at the top of the list for a 
medicaid waiver group home (albeit a pretty medeocre one).  Right now it's  
pretty much a full time job just keeping the group home doing what they are 
supposed to be doing, (he still spends three nights a week at home) and mom can 
handle that for now.  When mom and dad go out of town, Tim (my other brother) 
and I keep tabs on Bruce and have him over to our houses etc. 
I am currently working on helping Bruce's church start a group home, which he 
will like much better.  Tim is trying to help me as much as he can, but he is 
super busy right now with a new wife and new job and new house, etc., but he 
loves Bruce and I know he will help as best he can when needed. 
I am thankful every day for my brother Tim and sometimes wish there were more 
of us siblings.  I think that if there were more of us it would be pretty 
likely that we would all help out in some way because of the experience of 
growing up with Bruce and because of the way that our parents raised us. 
Demonstrating the importance of being a family and taking care of family.  As I 
tell my boys often, you are an Allis and Allises stick together. 
  James Waite <jwaite@xxxxxxxxxxxxx> wrote: 

----- Original Message -----
From: "Glenn&Susan Hardy"
> I
> don't want Mark to have to be her sole support person and since I know
that
> no group home could ever be like home

Every now and then I wonder if we should have had another child for this
reason. I really don't want Molly to be stuck with looking out for Alex the
rest of her life.

But then, you could have 6 kids and 5 of them not willing to help out.
Life can be tricky sometimes and there sure are not guarantees.

Michelle mom to Alex (14,partial trisomy 14 mosaic) and Molly (11)
MichiganUSA


Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line


Cheryl -sister to Bruce T9 mosaic 35yrs old- wife to Steve- mom to Zach 10 and 
Nathan 8


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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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