Fetal Alcohol Spectrum Disorder

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Graduation gratifies, but unconventional future looms

What I said in the newspaper this week:
Before you read this column, chant this line: “This is not about me. This is not about me.”
I say that because I am bound to offend some very good people with this piece. I’ve done it before, when I’ve taken sacred tradition or community perspective and … observed it, with no intention of being negative. You’ll have to trust me — this comes not from a place of anger, but joy and sadness. In nearly equal doses.
It’s a graduation year at Home Place, an unequivocally happy moment. Our graduate has surprised anyone who’s known her long. Burdened with prenatal brain trauma, learning has been terribly difficult at times. This is the girl who arrived at cognitive milestones long after her classmates had sprinted ahead. As she came into her teen years, social and emotional development proceeded excruciatingly slowly, grinding to a fitful stop for now.
Yet here we are, graduation-bound. We got the professional pictures, ordered announcements, agonized over the guest list and are discussing the family party menu. Endlessly, since older sisters are looped in and opining.
This didn’t just happen. Graduation comes about because of the intense — and that word isn’t big enough — involvement of professionals, neighbors, church members and friends who are willing to be a “village.”
By golly, we did it all. Tutored, cajoled, bribed, explained, explained, explained. Emailed, texted and phoned in a tight network of determination. We searched for help, found the best doctors, prayed the most-needed prayers.
But no adult in the universe could change some things, and that’s coming home to roost. This is where “sad” kicks in.
The graduation information from the school has been ongoing for months, it’s true. What’s not said says more.
There’s no scholarship buzz, for starters. Parents who have birthed high school seniors know just what I mean. Your kid starts getting the high sign by the school early on — “grades, community involvement, great endeavor equals scholarships.” Students are advised to visit the counseling office to mine all possible scholarship applications. You, doing your part, chain them to the kitchen table until those are filled out and submitted. Then you hold your breath along with your kid, hoping some relief from the cost of tuition will be extended because your child was deemed worthy. Or lucky.
Not this time, not at our house.
We’re not getting the recruiter love, either. Not from colleges or military branches. Certainly, pieces of mass mailings have landed here, with color-soaked pictures of beautiful campuses and delighted students grinning in clean-cut joy. Or children flying Air Force planes, whatever.
This doesn’t mean my daughter is not bound for college. We’ll be talking to the right folks to find a good fit for the girl who dreams of being a chef. We’ll start with one class at a time and watch what happens.
And that’s so great. I get that. I know that in the world of developmentally disabled adults, our girl has more options than most. Her brain has organic damage that left holes in lobes, but there’s a lot that functions beautifully. Like areas that determine compassion, appreciation, musical ability and capacity to love.
But I’m a mom. I want what I want for my kid and I’m not going to get it this time. This message came home to me a few weeks ago at Whitman College.
My girl is blessed to be part of a program that pairs special-needs adults with Whitman students. The group meets twice a month for activities that everyone loves: karaoke, tie-dyeing, treasure hunts, movies. It’s amazing how happy both sides are to be together.
Yet when I watched my child sitting on brick steps surrounded by Whitties, there was that moment of pain — knowing my blond-headed baby would never be seemingly care-free on a college campus, in momentary limbo from the dive into adulthood.
Truth is, adulthood for her will look much like her childhood. For years.
We’re also missing out of the not-so-important stuff surrounding graduation. Like the birthday party invitations that dried up a decade ago, there will be no party after the official senior party. Or the excitement of friends planning a trip before going separate ways to college. Not the sweet promise of a last summer at home, when your parents are slightly more tolerable when a light is at the end of the tunnel.
Actually, all that is the important stuff.
This is my first graduation of a special-needs child. I’m not doing it as well as I hoped. On one hand, people will say there is no need to rain on everyone’s end-of-school parade. To those I ask to please refer to my first sentence.
Others will counsel me to look at the bright side. And I will. Sometimes, though, we have to recognize the gray passing over us and acknowledge it as a valid color.

 

Filed under: everyone's kids, Family, FASD, Love, My house, our traditions, Universal pain, children, Fetal Alcohol Spectrum Disorder, Home Place, Milton-Freewater, moving forward, Sheila Hagar, special needs high school graduation, Walla Walla, Walla Walla Union-Bulletin

Miss Kate: The ray among the rage

What I said in the newspaper last week:

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I spend a quite a bit of time parenting my daughter in a repressed rage.
I’m talking about Strong Hearted Girl, who lives with such a degree of mental illness that she’s been unable to live at home for nearly nine years now.
I’ve talked about her before, about a daughter who got the shortest end of the bio-stick from a prenatal situation that resulted in a birth defect. Prescription drugs and alcohol don’t mix, and just craters fetal brain tissue.
So we deal with that the best we can. I’ve kept the promise I made to myself and the state of Oregon on our official adoption day that Strong Hearted Girl would always have me for a mother. And my kid has never seen me as anything else, not since the day she was 2 and complained to her twin, “I don’t like this mommy.”
Poor kid, I was her fourth mother figure and making her take a nap to boot.
Here’s what you might not know about parenting a child who lives with mental illness AND within a state system of care — every single thing you try to do for your child is hard as hell. Getting into place the things you absolutely know will help him or her have a better life is like rolling a boulder uphill. Then securing it with more rocks before you can let go. In a frigid downpour on frozen ground. With one hand tied behind your back and no shoes on.
You think I’ve gone too far, but not true — it’s typically worse. And whatever school district wherever my girl lives at the moment often hovers at the top of the “hardest” list. Administrators ignore my requests to have bits of the work she’s done mailed to me, where the front of the fridge waits to display it. Paraprofessionals get frustrated in dealing with my kid and forget that all deserve equal education. Bus drivers evict her for a snarly attitude.
I attend every meeting I can by phone (and there are many) and send off thank-you emails, but the traction I gain is minimal. And before you know it, we’re off to a new placement in a new town and district.
But I’m not here to complain. I’m giving you background so you can understand how wonderful “Miss Kate” is.
Kate is Strong Hearted’s primary educator in a post-high school program on the west side of Oregon, where my girl tries to absorb life-skill lessons in a three-hour school day — it’s all she can handle and often that’s a stretch.
Kate called me up the minute she saw my daughter on her new-student roster in September, to remind me she had taught her at another school, in another placement. She remembered the little girl from back then and was excited to see her again. “This is going to be fun!”
Knowing Strong Hearted is low currency, however, in dealing with her severe behavioral challenges. Strong Hearted would be the first to second that. So our Kate had her work cut out for her, and usually that’s the last I see of an enthusiastic educator.
This time has been different. Let me share part of the letter I shot out this week to Kate’s bosses and the school board. I’ve tweaked the names, as needed for privacy:
... Miss Kate has been incredible — patient with my daughter yet setting clear boundaries. She has done a great deal of educating staff about my daughter’s birth defect in order to help everyone. Kate calls me on a regular basis, using her own cell phone minutes, and emails me with concerns, seeking advice, and wonderful progress notes about my kiddo. This never happens to me and other parents like me.
Even as a very involved mom, I have only occasionally been successful at making educators understand how important it is to my child’s well-being that I am looped in on things. I have a lot to offer in terms of what works and what does not, but still it has traditionally been difficult to be seen as part of the team, as I live 275 miles to the east.
Kate has seen me as a team member since Day 1. She does an amazing job of advocating for my child’s educational needs, and helps in other areas where she can, like being my eyes to know if my girl has decent clothes on her back or is bringing nutritious and appropriate snacks.
Kate is a hero to me, and your high school is one of the few things going right for my girl at the moment.
If I would have been more brave, I would have added, “Please let her do her job right. Give her enough funding and get out of her way.”
I have no agenda with this column other than to offer it as a love letter to all “special ed, resource room, alternate education, behavioral classroom” folks. What parents of these students go through is difficult. What education professionals do with our children is tough. And, really, there’s rarely a Hallmark movie ending to the school years we go through together, I don’t care what the media usually portrays.
But sometimes, apparently, there’s a Miss Kate, too.

Filed under: Child approved, everyone's kids, FASD, too good to be true, children, Fetal Alcohol Spectrum Disorder, Home Place, Milton-Freewater, Sheila Hagar, Walla Walla Union-Bulletin

A Thanksgiving message from Strong-Hearted Girl

You guys remember my daughter, Strong-Hearted Girl, who lives with mental illness and other unhappy consequences of Fetal Alcohol Spectrum Disorder? She wrote something for this holiday she would like to share with you.

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This letter goes out to all the people who are struggling through the upcoming Holidays. The reason may be that you had a love one pass, or the fact that you cannot have family around to celebrate with you.

The truth is you are NOT alone. I am going through the same thing. I have family too far away for all of us to fellowship every big Holiday. I am also writing this letter to encourage the individuals who are alone to find ways to still have fun even through their time of loneliness.

This year for Thanksgiving I am staying at my house where I am living alone with several of my caretakers, and I don’t have any family here. I am still going to have fun. Even with family far away, I have decided I can still do the things I would do if I was with them. I am planning to watch the Thanksgiving parade and the AKC dog show. I am going to see if I have any friends that can come over, if not that is okay. I am going to have snacks to munch on and I am going to tell stories about previous Thanksgivings that may have been memorable.

For all the people who have recently been placed in facilities or have just moved from home. I know how hard it is. I am hoping that you find this letter helpful and supportive. I also hope it helps comfort you.

I pray for every one that reads this letter that you all will have great times with the people you may cross paths with during the Holidays.

I also wanted to write a letter to the people who wrote me back about my last blog. I appreciate all the caring and kind words people gave me. For the people who were not able to I would still like to say thank you for supporting me and my family!


Filed under: back to basics, Child approved, FASD, My house, our traditions, FASD, Fetal Alcohol Spectrum Disorder, Home Place, Milton-Freewater, moving forward, Sheila Hagar, Thanksgiving, Walla Walla General Hospital, Walla Walla Union-Bulletin

Two heroes at my house

Here’s the deal. I want this to be a poignant, encouraging post and maybe it will be, but first I’m  tattling on Camo Man.

My husband is a terrible tease. His sisters warned me of this and their words have rang oh, so true.

So when I got his text on Wednesday, I didn’t believe it.

“We are going out to eat tonight.”

My text reply? “No way.”

When he called with the same message, I made him hand his phone over to an official at the DMV.

“Did she pass?” I asked Fern.

Fern knows CM and needed no explanation of why I was second-guessing my man. “She passed!”

NOW we can get to the heart of the matter.

My girl, Martha Stewart, Jr., struggles with things most teens just take for granted. Prenatal injury to her brain deeded her a lifetime of having to try twice as much for every victory.

Take getting a driver’s permit. You’d think I’d just leave that particular milestone alone, given that MSJ has to hammer VERY hard to memorize nearly anything (Although she does a fine job with pop song lyrics. Go figure.) And she has no desire to drive. Ever.

But I wanted her to taste the sweetness of an undeniably “growing up” moment. I wanted her to have the bragging rights we all had after tackling the beast of learning all those road rules. I needed, she needed, to know that the impossible can be possible.

And that willing yourself to fail won’t work when your cheerleaders won’t cooperate with that attitude.

Not to mention one little fact. When Martha took her hunter safety test she mowed through that thing so fast, Camo Man and I could only look at each other, both believing she’d blown it.

No. She missed one out of a zillion questions. She missed one. One.

Nonetheless, my bravado was wearing thin after many attempts to get the elusive permit had failed. A number of us had tried, really hard, over several years to help Martha study, comprehend and retain.

She tried to return the favor by passing the test. Nine times she tried.

A friend, well-versed in developmental disabilities, suggested I consider stopping before I did damage to MSJ’s self worth. She had a point and I was tired of feeling defeated. So was my kid. “We’ll just have to cross this off the list,” I said.

I didn’t factor Camo Man into the equation.

He started just after the wedding, sitting down with Martha and the Oregon Driver Manual on some evenings. Over and over he presented possible driving scenarios and asked her what she thought was the best answer.  Wherever we drove, he made her assess situations and tell him what to do.

Camo Man took MSJ to Test Try No. 10 and noticed she chose to use the audio version, where the questions and possible answers are verbalized over headphones. “She knows the answer, but that makes her second guess herself,” he reported back. “She’s just going to read the whole thing herself next time.”

Camo Man didn’t give up, even when was exasperated with the holes in my daughter’s brain from fetal drug exposure. He never indicated she was anything more than capable of getting  this done.

And then he offered her a gun when she passed. Not if. A selection of hunting rifles to choose from. I sweetened the pot by offering to buy a box of ammo. We are, apparently, “country,” to quote MacMama, my oldest daughter.

I also said we’d celebrate with dinner out, which is a real treat at our house.

By Wednesday, Martha Stewart, Jr., had waited the requisite period to try to earn her driving permit once again. She and Dad had spent another cluster of evenings hunched over the kitchen table with that book and her anxiety. The same questions were asked by my husband, gently and without a hint of impatience. Well, barely a hint.

He put in a day of work then picked her up. I had already texted him a rah-rah note: “Try not to get down if she fails. It won’t be for lack of effort on your part.”

Plus a little lovey-dovey stuff to show him how much I appreciate his parenting skills.

The text came at 3:18 p.m. The one I thought was one more tease. Then the happy pair drove home, where Camo Man laminated the temporary permit and Martha Stewart, Jr., commenced making those phone calls in which one is allowed to unabashedly brag.

We ate dinner out. Hunter Boy and Miss Tall and Blond offered congratulations. The heroes shared ice cream with the rest of us. Gun selection will come this weekend, I suppose.

As my friend John assures me, “Love always wins.”

 

 

 

Filed under: Camo Man, Child approved, Family, Love, My house, My Man, Camo Man, Driver's permit, Fetal Alcohol Spectrum Disorder, Home Place, Milton-Freewater, Oregon Drive Manual, Sheila Hagar, Walla Walla, Walla Walla Union-Bulletin

My daughter’s agony and hope

As you know, I have written about the incredible burdens my twins were saddled with when their tiny, prenatal brains were bathed in toxic substances. If you don’t yet know, let me suggest you search this blog for posts under Fetal Alcohol Spectrum Disorder. There are several and they outline our family’s history in dealing with the issue.

Twin No. 1. was given the biggest load to carry. She had to leave home at age 10 — and barely weighing enough to sit unboostered in a seat belt — to get the services needed to handle the rages her mental illness presented. Medication and alcohol-induced injuries to her brain created behaviors that no single family can handle.

Sometimes not even a whole agency. My kiddo has been moved more times than not when a treatment center or care organization ran out of ideas and hope. Ran out of people willing to handle the very essence of her disorders.

She’s moving again, in fact. This time, however, it wasn’t because of anything she did. Another resident, with just as many challenges, attacked my girl as she lay on a couch in her group home’s living room. That set forth a chain of dominoes and when the last one fell, Twin No. 1 had to move.

It is completely and utterly unfair, as are many, many things in the system of care that Oregon — and most other states — cobble together with laws and policies, all of which sound right and reasonable but come with unintended consequences. There is nothing fair at all in this child’s life, starting with the fact that her birth mom was too incapacitated to make good and healthy choices while pregnant.

My girls have holes in their brains because of that.

You can understand why Twin No. 1 spends a lot of time being angry. Sometimes she hurts people, sometimes people hurt her. Sometimes she’s furious with me, sometimes I don’t much like her attitude — she won’t do what she’s supposed to, even when she recognizes it’s best for her. Like go to school and take a shower.

Yet … we go on. She and I feel we were put together for a reason, and we suspect it has to do with educating people about using drugs and alcohol while pregnant.

We also think we’re supposed to change the stinkin’ system. Two little David figures against the Goliath.

So my kid has made a start. I invited her to write about her feelings on this state of affairs and she took me up on it.

Dear Mom,
I want you to know that I am writing on the behalf of the workers as well as the clients and their families.,  I feel like the people who work for people with disabilities are getting under paid. People in the outside world don’t know it, but they risk their health just to keep children safe. They are in a risky situation every time they come to work.  They come to work to help children get stabilized. They take the clients to their doctor appointments, they do the best they can.
On the behalf of the clients, I want everyone to know I am being the voice. I am being the voice to let people in the outside world know that it is very stressful. Moving into a new placement, meeting people you have to live with, you could move at any time with or without notice. I am a client in the *Coach (the name has been changed by the writer’s mom) Network and I had two great people lead my treatment meetings and help guide though life, but they had to leave the company and it kind of got out of hand. I got into a very bad, unsafe situation, and I was not getting the attention and support I needed to grow. I was not getting the care I needed. I am now in the process of moving. I have been in a hotel for thirteen days. We finally found a home. I will be moving into. I was not even in the Coach Network for a year. Believe me, it is very stressful.
A note to the adults and adolescents …
I am going to advise you to keep your thoughts positive. If you think positive in a negative situation then the less stress you will have. If you get anxious about a meeting or about a move decision do an activity or think of a list of questions you would like to ask them. Just remember to keep a positive attitude and you will get the right situation. I have faith in you.
For all the parents …
I can understand the stress and anxiety you may be going through. My family and I have been going on with finding homes for me for a very long time. I just want to encourage all the parents to be patient. I know it is hard, and very emotional, but I have a lot of faith that all families that keep going through with best interest in your son or daughter it will work out for the better. I am getting to be a pro at the moving, but it doesn’t seem to be getting easier. The one thing that is easier is that I feel like I can be a little more open  and positive to the options. I just wanted to let parents who are struggling to see a point of view from someone who is in the situation.

 

 

Does this young lady know how to write or what? I’m so damn proud of her. So proud.

Strong-Hearted Girl

So, please, take this letter from my girl into your heart. Send it to others, to everyone. Teachers, pediatricians, your Aunt Joan. Most of all, send it to your elected representatives, 100 times over.

If you want to respond to her, you can send an email and I will forward it — sheilahagar@wwub.com. Let her know the light she is shining has reached you.

Because things need to change. So many things that I can fall into a state of despair and hopelessness. Twin No. 1 — whom I now dub “Strong-Hearted Girl” — does, too. At those times, though, we shore each other up in one way or another. We go on.

And now you’re walking with us. That’s good because the two of us can really use the help.

 

Filed under: Child approved, everyone's kids, home place home work, what you can do to help, writing, adoption, children, Fetal Alcohol Spectrum Disorder, Home Place, Sheila Hagar