Thursday, December 4, 2014

Very near and dear to my heart

Most of y'all know about the Cute Chicks and that they are autistic. And I've shared some of our trials and triumphs here. We're getting ready to face something that is going to be a little of both, but I'm hoping more triumph.

I'm the kind of person that puts down deep roots. I love for life and I abhor change. When I devote myself to someone or something, I stick. I stay devoted until the end, bitter or better. And now I'm facing a huge change in my life, something so drastic and something I'd never considered. Without going into detail, it's got me scared shitless. And it also affects the Cute Chicks and their futures. Part of an autism diagnosis is the ability to attend public school until 21, but then what? What to do with your hours from waking to sleeping when you're out of school? Some autistic folks are advanced enough to attend college or trade school, some are able to work in sheltered workshops where they can have an earning opportunity and a chance to work with and relate with others. Some get regular jobs, sacking groceries or working in fast food. There are possibilities for a rich life, granted they aren't as plentiful as they should be, but if you look you'll find some good ones. Teen Queen will be 20 next May, Baby Queen just turned 17. The clock is ticking for us and I'm having to face the question of what to do about their futures. You see, as their sole custodial guardian, all of those decisions are mine to make.

Most parents have that point where the kiddos head off to college, marriage, families, adventures of their own. Once 18, the choices made belong to their children, and right or wrong, good or bad, mom and dad are not responsible. I can see where this can be painful and frustrating. In my case, all of their choices, life decisions, and future possibilities are in my hands. TQ is more open and adventurous, more plugged in to reality, more ready to go out and meet the world. That being said, she's still not capable of making legal choices, medical choices, paying bills, driving, or keeping a house or apartment on her own. Her future is going to require a delicate balance of independence and care. She needs ample opportunities to work and meet people, and maybe, just maybe, have a boyfriend, love and passion. ~gulp, sob~ She's the one I need to let go of the most, and the one I fear for the most. She's keyed in to the world around her enough to know she's different and that things her peers take for granted, she isn't capable of doing. And it frustrates and saddens her, and breaks my heart. So I attempt to give her as many "normal" life experiences as possible. Homecoming games and dances, prom, jobs, and I'm teaching her to drive the mule. She can't drive on city streets, but she can get the feeling of a little freedom. She's started working at the local newspaper placing the inserts and mailing labels, and after Christmas, she'll be working at the local Animal Shelter cleaning cages, feeding and watering and walking the doggies. This summer, she's got a job with a local rancher to clean horse stalls, care for tack and eventually groom and care for the horses. It's a good start, a good transition.

Baby Queen, oh where do I start? BQ is considered "low functioning, borderline mentally retarded". Only because she's nonverbal and hasn't developed a "reliable form of communication". She can't be tested accurately, can't be labelled or pigeonholed. So she's relegated to the lowest level that gives her the most services. What she is, and this is from 17 years of being her full-time minion, is freaking brilliant. She's a genius when it comes to reading a room full of people and choosing the ONE person who is most likely to do her bidding without question. She is a master manipulator, a charmer, adorable, sweet, and completely ruthless. She KNOWS what she wants, she knows how to get it and she knows who to recruit to make it happen. When she and TQ were in elementary together (small school, 4 Special Ed kids, one class through 4 years), I would regularly get calls from the teacher to check their backpacks. They had devised a system in which BQ would create a diversion and TQ would raid the snack cabinet. "Does TQ have a bag of Oreos in her backpack?" "Well duh." It was three years before they set them up and figured out the whole scam. During nap time, they'd move the snacks to a new location, TQ always napped but BQ would play possum, watching everything going down. Then right before time to go, BQ would take her sister by the hand to the new hiding place and leave her there as she went off to create the diversion. This went on for YEARS before college educated smart adults caught on and put an end to it. As her teacher said, it was a sad day for everyone to end such enterprise. So what to do with an "adult" who doesn't speak or have any real form of communication, but who is absolutely sweet, loving and adored by everyone? She's never really had to DO anything because she manipulates her minions to do it for her. We've looked for openings for Evil Genius, but they're few and far between.

The answer came when I found Disability Resources Inc. of Abilene, TX. This place is heaven for adults with challenges. Down's Syndrome, Autism, brain injury. With a resident program perfect for Teen Queen and a day program of sheltered workshops for the Baby Queen, this place works hard to find something for all of their clients, carefully matching skill levels and interests. But it's not just about work. It's play and fellowship, friendships and building families, caring and loving  and supportive on 170 acre main campus with 7 group homes, a stable full of horses, gardens, greenhouses, and a business enterprise in which the clients (they call the residents and program participants clients as a nod to who is the focus) participate to make funds for the center's function. There is a DRI Store featuring salsas, dry rubs, pickles and chutneys made from produce raised on the campus and produced in the kitchen facility. They have parties and dances, and a hand bell choir called the Bell Peppers (how cute is that?), activities that provide as full and rich and normal a life as possible. It's a church sponsored organization with regular church services, smack dab in the heart of Texas. It fits the girls to a tee, and it gives me hope that I can provide a future for them that is as close to what their peers would experience. I had to get them on the waiting list now, because it's about a 3-4 year wait. So that's time to worry and pray. Hope and dream. And obsess over whether it's the right choice. My fierce mommy heart wants to keep them with me, no one can protect them better than I can. But I know that would be stunting and smothering them. This means leaving my comfort zone and moving farther away from my aging parents, balancing the needs of my kids with the needs of the people who loved me and raised me and didn't kill me in my teens. I'm torn about leaving my folks, torn about letting go of my girls. Just plain scared shitless.

So, if you're of a mind to, please offer up some prayer for us, that the girls get into this great place and have an opportunity to start the next phase of their lives, that I have the strength to do it when it comes time. And if you can, peruse the DRI Store and make some purchases to support this greatly needed resource. They have some really cool gift ideas.

Thank you and much love,

Angel

DRIAbilene Home page

DRI Store

18 comments:

  1. You and your little ones are absolutely in my prayers! You are an awesome mom! What a blessing you are for them! Their angels see the face of God as He is watching over them...and you too.

    God bless and have a Merry Christmas.

    Arioathkeeper
    Lubbock

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  2. Absolutely, Angel. Godspeed.

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  3. If I can help a bit, let me know.
    jay5523@att.net

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  4. My family's prayers, of course, for you and yours.

    C

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  5. Absolutely Angel. Remember, when God is in control, the right things happen when they should. Prayers for an easy transition and all the help you need along the way.

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  6. Don't get discouraged. My youngest son was diagnosed as borderline MR. He was tested as "too dumb to join the Army". Now he is married, happy and for years was a department manager at Wal-Mart. Now he is a regular top seller at the local Lowe's. He has worked in every department and is considered the "go to guy" in an emergency. He just didn't think within the box like everyone else did. A little time and maturity may help your daughters, too. Meanwhile you all are in my prayers.

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  7. Best wishes for you and your girls from a father of a 30 yr. old born with CP. He left our home of his own accord to live in a group home 6 years ago. Nothing as involved as you describe, but it has allowed him his "independence" from Mom & Dad. Though he maintains nearly constant communication with us by calling everyday to check up on how we are possibly surviving without him here. ;)

    It is a chance to allow those not fully able to be independent to the extent of their ability to be such.

    The place you describe seems highly beneficial (both for them & you) and you will not regret your decision. It's another transition of life which is inevitable to us all.

    Again, best wishes for your next step in life's evolution.

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  8. With all my heart and soul. You know that.

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  9. Praying for you and the kiddos. You're love for those girls is an inspiration and a light on the hill for those seeking to be better parents and people.

    Never forget, we serve and are loved by a big God who does big things! :-)

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  10. Our prayers are with you. We have a very autistic 15 year old grandson who is currently hospitalized. He will be entering a group home when he is discharged. I don't know how our daughter keeps it together. Same for you. You guys are my heroes.

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  11. The prayers are always with you and the chicks.

    There is a free TV channel available on Roku geared toward families with autistic children that may be of interest to your readers who are dealing with this. You may want to check it out at this link:

    https://www.roku.com/channels#!details/18485/the-autism-channel

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  12. My family sends up prayers for you and yours...you are in our thoughts.

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  13. Prayers to you and yours. Thanks for the tip on the shop page, that will help take care of quite a few people on my Christmas list. :)

    Brass

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  14. Just had to put a an autistic grandson in a boys home.
    He played the Jekyll and Hyde to an art form.
    Normal in our hootch and smeared shit on the walls at home.
    As a teen he is big enough to be a danger.
    Hope and pray for all of us.

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  15. Prayers sent up. You're a great mom, anyone that says different needs a kick in the balls.

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  16. Prayers for y'all. You've done better parenting for TQ than most do for kids of any abilities these days. Any help you need in person, I'm not far down the road, and can pick up ario on the way.

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  17. Sounds as though they got the best Mother on earth. My thoughts are with you and yours.

    Rob J

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  18. Prayers! Sometimes, what IS best for the child, is not what we personally, selfishly, wish or want to happen. Do whats best for the girls and bless you for all you have done.
    A loyal reader.

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Play nice. None of you are too old for a spanking.