I love this diary and wholeheartedly agree with the sentiment. It DOES take a village. Thank you for sharing your story, MoanaLiz! -Elisa
Even though this time around I wasn’t a Clinton supporter, I have always loved the saying “It takes a village” and I associate this with her. In my family it really does take a village. In a way over the next 6 months, I am going to become a parent.
My brother is mentally disabled, but to describe him is so complex and difficult, an entire diary probably isn’t enough. I wrote my college essay on what life with my brother is like. He is undiagnosed mentally disabled. This just means he has no term to describe his disability, for example, he isn’t autistic, there is no term to describe him. The scientist in me is convinced that his disabilities are the result of a weird freak mutation upon conception. When tested in high school, they attributed his IQ to that of chimpanzee’s, however, he knows more about American History than I ever will. He is rather hard to figure out.
He can’t read, only sight recognize words. Math skills are horrific. Can’t tell time. Can’t really write much. His speech is influenced, often people wonder if he is from another country, has an accent. He is the nicest, most generous, funny, interesting person. Our family was thrilled when at 22 he finally moved out of my parent’s house and in with a roommate who also has some disabilities. He surprised us all by not burning down the house in the first month. He lives outside of Boston, and has memorized the entire “T” system. However, he can’t find a meaningful job that keeps him stimulated. There are so many things he can’t do, it is often hard to find a job that doesn’t include one of those things. He has been a bagger at a grocery store for so long, however, they refuse to give him more than 8hrs per week, and generally treat him poorly. The other jobs that he has tried out, haven’t given him the time he needs to learn a new job, he has been let go after three days. I sort of understand this….
So, he is becoming depressed there in MA, so my parents have some money saved and they were going to buy him a condo, in ME where they live. My parents are both 55, my mother is recovering from cancer, my father still takes care of his mother, and they are tired. So, we have, as a family, decided that we will take the money and buy either a two family, or a single family + in-law apartment, here in RI where we are living. We will buy in Providence so he (and us) can be close to public transport. I have already started researching groups that may help us in the job hunt, and places to work, and peer groups. He is hard, he doesn’t fit in with most mentally disabled individuals (autistic, down’s etc..), but sometimes can’t keep up with ‘normal’ kids. My husband has been wonderful, and when I met him I told him that helping to care for my brother would be my job one day, and that I hope he understood. I will say it again, my husband is wonderful.
So, here we are. Getting a child, but not. We don’t have kid of our own yet, but are planning in the next few years. He is a grown man, but often needs help with some childlike things (telling time, making change etc). Luckily, he doesn’t need help with personal cleanliness issues. I just keep thinking how many other families are in situations that are the same, or way more desperate. Then I think to the future, all those families with autistic children, and a society not ready to help them transition and live in ‘the real world’. What as families will we do?
It takes a village. Families function in all sorts of ways, but it takes a village. I am mostly convinced that this is the only way we can all go forward these days.
What a touching story
and I can tell you much you love your brother. And how great that your DH is on board.
Best of luck to you all. I hope that you’ll be able to find a job that will be a good fit for your brother.
You are such a great sister
and a loving person. DH sounds like a great guy as well.
not to get all spiritual
but this totally reminds me of the saying “God only gives you as much as you can handle.” To put it more cosmically, the universe knew what it was doing when it gifted your family with a special person like your brother- you seem to get him, get the responsibility of it all and not resent it. Bravo.
love
I know he’s your brother and you love him and that’s why you are taking him under you and your DH’s wing, but you really are a wonderful sister and daughter for taking his care on. As is your husband.
Best wishes to all of you on your new journey together.
blown away…
and proud to be a member of this village. a beautiful story and you are a wonderful sister and a lovely inspiration for us all.
very touched.
I have a brother with Down Syndrome who is turning 17 tomorrow.
I was almost 16 when he was born, so I did my share of changing diapers, feeding him bottles and rocking him to sleep. I always considered him my first child, in a way.
My parents are young but I know that someday we will likely end up caring for my brother. I, too, had to make that clear to my husband at the outset. Luckily, my husband loves my brother just as much as I do, and our village is plentiful and generous.
My best wishes to you and your family. You are all so blessed to have each other.
i just spent hours today…
on the phone with agencies trying to sort out the needs of my older brother david, who has profound autism. your story is indeed beautiful, familiar, and comforting.
i too told my husband prior to marrying, that care for my brother would be mine… yet my husband is almost as old as your parents, and my parents are in their mid-sixties, so it may be on our horizon soon too. as we looked at houses last weekend, we particularly liked the ones with in-law suites or carriage houses.
i am glad to hear of other sisters like me with wonderful husbands who understand and embrace these responsibilities, but i do wonder where the rest of the village is for these adults and their families. when my brother does come to live with us, it will be out of a group living home he loves. i hope it’s a long time away, but whenever they discuss funding for adults with MR, we hold our collective breaths. and my mom’s best friend has an adult son with schizophrenia… every time he finds a good space or program, the funding gets cut.
i hope our next president can help bring the village in just a bit closer. until then, i am so glad your brother has you and your family to support him and his goals for independence.
Your village
Your village sounds really solid. I do wonder though about our society, when we’re so bad about taking care of vulnerable people. For instance, I see this getting way worse as the baby boomers age. There are 80 million of them (my parents among them) and we have the means now to keep them alive, even though they may be in terrible health. I do not think we as a society are prepared for this. It’s not just a matter of building more nursing homes. It’s going to be a whole new way of looking at family and how we deal with responsibilities.
I think people like you, who are doing the hard work now to set these villages in place, will be so important as we try to figure all this out.