Sisterly love

Sara - posted on 01/10/2009

all i can say is THANK YOU.

Kelsey - posted on 01/10/2009

Quoting Sara:

hi, kelsey my name is sara, i have two childern a soon to be 2yr old girl lilly and a 7 wk old son max, max has down syn. and i cann't stop thinking about when my husband i are gone (god help us not for a long long time) i worry about lilly and if she is going to be enough for max, and i feel its to much for a sister to handel, but then again i'm thinking of her as two not an adult and max as 7 wks not grown. do you have anyother siblings or is it just you and your brother, thanks so much for your post. i really nice to hear from another side of a family.

I do have an older brother. He is 16 months older than I and that would make him a little over 4 years older than John, our brother with downs. We both took part in helping mom out with John, when she wanted to do something on her own. My mom was very involved with ministries at church (she was the children's pastor for awhile) and often spent days at church during productions and such. During those days, I was put in charge of John, specifically because there was more sybling rivalry between William (oldest) and John (youngest). I was given instructions on what John could eat, mainly because... he would eat everything he laid eyes on. I made him his beloved spaghettios and other than that John simply spent probably too much of his time playing Nintendo, on the trampoline or playing with his "guys" (action figures). He was easy and I did not mind at all, helping her out with him. My mom would call several times a day to check on things. She worried mostly as John got older because when he would get mad (usually because I didn't give in to his food requests as easily as mom), he wanted nothing but mom and would sometimes threaten to run away! He packed his bags often I must admit. The funny thing is.. you always knew ahead of time of his plans because he said EVERYTHING outloud (still does actually). Sometimes I could reason with him... other times I had to physically keep him from leaving the house (we lived way out in the country). It became much more difficult when he grew up! All this to say that I don't think my mom ever thought into the future about John needing anyone but her. I'm not sure if that is because of the given life expectacy or anything else... I just know this...

She THOUGHT it could only be her.

My mom and dad actually ended up getting divorced (when John was less than a year old). I honestly don't think it had anything to do with John having downs, but my Dad has taken a back seat to parenting John since they divorced. We saw our Dad Tuesdays and every other weekend and my Dad's approach was to treat John like a "normal" child. My mom unfortunately leaned towards bribing/ultimatums (because he was/sometimes still is, so stubborn). My mom recently remarried (when John was 19yrs) and I think a combination of her new marriage and the fact that my dad was no longer supporting John financially...made her start to think about John's adult life. I think until then, she could only take it a day at a time. I think the school age for downs is 25? depending on the state? And while John is still quite a while away from not being able to occupy his time with education, my mom finally grew past her identity of only being John's mom.

I noticed that my mom was having a more difficult time making decisions for John- on all aspects and she couldn't necessarily rely on her new husband to enforce what she laid out, because John had just met the guy (great guy) and wasn't too keen on respecting someone new. John is very self sufficient (unless he is accostomed to being bribed). So, to provide some perspective for my mom (and give her a break) I offered for John to come live with my husband and I in Texas for a month or so. She ever so reluctantly agreed! I know she thought it was a good idea...its just hard to "let go" even to someone you trust. She has been doing things for John for SO long. So with MANY instructions she let him come stay with us.

It was agreed, from the git-go, that when John was with us...it is a different household, different expectations...same respect is required. John was initially excited :) He came with us the day after Thanksgiving and we were to return him at Christmastime. I could write a book on how it went.... There were all sorts of things learned on all three sides. John grew up a little bit more I think. He was a gentleman and did his best to obey what my husband and I set up as his new structure. He was so happy to get home though. One huge thing that became of the whole ordeal was that my mom heard reports of John doing more and more things, on his own, without being bribed and without any unnecessary emotional expense. He showered, shaved and dressed all on his own (he's always been able to.. just not without a snack as a reward). She got to hear that John can still be John without her. Kind of a bittersweet thing I can imagine. Thing is, as soon as John got back to Mom.... he was asking her to do the things she had always done for him before, but now my Mom realized that some of her habits were preventing John from having the pride of responsibilty.

Less than a week after John got back into the swing of things at Mom's house, she found out about a group home, three miles down the road from her! And she lives in a very small town. We had both been praying, trying to figure out what all we learned and how Mom would figure out how to regain control of showing John he could do anything (for himself) that he is physcially and mentally capable of (in our minds...everything). Mom made an appointment to talk to the couple that open their home...

They have a HUGE heart for special needs people. They had a place for John! They are young (late 20's) and they have a huge house that they share with 12 special needs people. All of the members of "their family" have to be 80% self sufficient and they are loved! John moved there last spring and he is a new person(and yet the same sweet John). It took my mom sticking to her guns and only being availble to John by phone (everyday) and in person on Thursdays for John to spread his own wings and establish healthy boundaries with his family. It has been the best thing. John still comes to visit my husband and I for atleast 2 weeks every year. He calls it his "vacation". My mom takes John with her sometimes when she travels. Sometimes she doesn't. He's not too far away if she needs him or he needs her. He has really started to become the adult that we can see will be very successful in life. He has held a job (at the bowling alley) for a year now and is learning to be a good steward of his money. His new "parents" Jason and Jessica hold him accountable for taking care of his own laundry, getting his homework done being as respectful as possible and completing the chores he shares with his other family members. John absolutely loves it. When he's been on a long road trip with my mom and they get back into town, Mom usually offers to let him stay at her place for the night. He almost always says, "No thanks, I'd rather just go home to my own bed".

My mom knows that should anything happen to her, I take on full responsibility for John and anything he needs. I hardly doubt that I could get John to choose me over his new family. I have a great relationship with Jason and Jessica (the new parents) and John often calls me to tell me something cool that happened or to complain if he's gotten in trouble and doesn't think he's deserved it :) My husband and I have talked about John living with us permenently if need be, but John is able to stay at his home forever. I know Jason and Jessica have such genuine hearts... that will always be his home. Financially it works out perfectly (we didnt' have to plan ahead). There is state support for group homes.

I can imagine that at this point, you wouldn't think of trusting anyone but yourself and members of your family to care for your sweet boy. Funny thing is, our family grew so big when we had John. So many people are blessed by downs kids and they become life-long friends. I think that comes with the genuineness, open, tender-heartedness of downs kids. Their emotions are prevelent. I just a little downs boy (probably about 5) at Target today and smiled. Makes you wanna go up and hug em (and their mom). Siblings are obviously beneficial now and later but I wouldn't limit your support to them. It makes sense that a family member be responsible in case of your absense but some friends are better than family.

Sorry to be so long. Just thought I'd tell you what our experience was so you could see that things will probably work out perfectly for your needs, in the right timing and I'm sure your son already has a great big sister that will be there for him, whenever. If you've ever seen the Disney Christmas cartoon entitled 'Small One'.. that's how I feel about what turned out for John. If you can't tell, I love him.

Ask any other questions..obviously I'm an open book!

btw Sara, I LOVE the name Max. So cute. I will be praying for a very blessed first year of Max's life and that you are given many glimpses of the great relationship he'll have with his sister later on in life.

Sara - posted on 01/10/2009

hi, kelsey my name is sara, i have two childern a soon to be 2yr old girl lilly and a 7 wk old son max, max has down syn. and i cann't stop thinking about when my husband i are gone (god help us not for a long long time) i worry about lilly and if she is going to be enough for max, and i feel its to much for a sister to handel, but then again i'm thinking of her as two not an adult and max as 7 wks not grown. do you have anyother siblings or is it just you and your brother, thanks so much for your post. i really nice to hear from another side of a family.