FAS Teenagers, Adopting Special Needs, and Loving in the Face of Unloveliness

 tonia 

To begin this series about parenting, particularly concentrating on the shifts that take place as we grow in grace, I chose to start with Tonia Peckover.  Some of you may know her as “sparrow” from her old blog, Intent, later to become A Study in Brown.  She is a homeschool mother of four and published author (see here to learn more about her wonderful book, written with writing partner Ann Voskamp of Holy Experience).  Enjoy. 

Tonia's Children

Tonia’s Story:

I sit uncomfortably on the edge of an overstuffed bench right next to the counseling office’s front door.  Across from me a boy in his late teens is stuffing tobacco in the space between his lower lip and gum.  I catch his eye accidentally and maddeningly feel my face grow hot.  He smirks and ducks his head down.  Another door to the left of me opens and two more teenage boys shuffle out.  They seem huge, made fat and puffy by their coats and backpacks, oversized jeans and flopping shoes.  The tallest one sits right next to me, consuming the small space that was left on the bench.  I resist the urge to pull back and try to smile welcomingly.  The two boys begin a loud and strange conversation about snowboarding, music and food.  I turn away just a bit and look back at the thick file in my hands.   

“Birth mother admits only to drinking two beers while pregnant….mother and baby both tested positive for cocaine after delivery…..Fetal Alcohol Effects is highly suspected….Current foster home is willing to adopt….” 

It has been years since I read over this report.  The tears strike my eyes hard and fast.  I swallow and turn my back a little more to the spreading boy beside me.  He is untangling headphone wires and dropping candy wrappers at my feet.  Quietly, I close the file, scanning the remaining contents from memory.  There are reams of paper detailing medical issues, physical therapy appointments, education plans, counseling appointments:  the fluttering trail of a childhood marred by drug and alcohol effects.  

  I’ll add more paper to the file today; paperwork for the next stage in this journey.   FASD teens frequently show destructive and deviant behaviors.  60% of diagnosed victims end up in jail.1   My thirteen year old son has arrived at this stage as if on cue.  These cluttered, defiant boys that litter the waiting room could be my boy.  And I am one of these parents: the ones who looked harassed and helpless; wearing their impotence with a stunned air.   

Finally, the counselor walks into the waiting room with her benign smile and collects me.  I talk nervously and unnecessarily as we wind through the corridors.  The counselor is calm and cool, entirely in charge, making me feel even more inept.  I try to remember that this is not about me today and swallow some more pride.

 As soon as I sit down in the cramped office I notice the Scripture on her wall and the tears fly at my eyes again.  Thank You, I whisper inside.  I had been nervous about the County Mental Health Department and filled God’s ears with prayers for guidance over the last week.  He is near. 

For an hour we fill out paperwork, trying to get a sense of the issues currently facing us.2 

The counselor begins, “On a scale of 1-5, 1 being ‘never,’ and 5 being ‘always,’ please rate D’s behaviors: 

Aggressive with others?” 

“4” 

“Lies or makes up stories?” 

“5” 

“Has difficulty getting along with peers?” 

“5” 

“Steals?” 

“4” 

“Uses inappropriate or vulgar language?” 

“5” 

“Feels isolated, lonely, misunderstood?” 

“5”

 “Expresses suicidal thoughts?” 

“4” 

And on and on we go.  When we are finished the three page questionnaire is littered with ‘4’s’ and ‘5’s’ and I feel oddly liberated.  The counselor remains impassive, but I search her face for sympathy anyway.  “Do you see what I have to deal with every day?  Do you see?”  I want to shout. But I just sit quietly, still as summer water. 

We make plans for the next steps, and then the counselor puts a calculated yet friendly hand on my back as she ushers me towards the exit. 

 “This is a complicated issue.  There’s probably nothing more frustrating than parenting one of these kids.  They look “normal” and everyone expects them to be “normal,” but they are invisibly handicapped.  It’s very, very hard,” she assures me. 

I nod and speed up, hurrying myself towards the swinging doors.  Suddenly, the hall feels tight and dark.   Everywhere I look are baggy-eyed parents and slumping boys.   I burst out of the counseling office and take a deep breath of the December air.  He is near, I remind myself. 

On the drive home my thoughts turn to a scene from the morning.  My daughter had found the Bible I carried through my teen years, the years when I was “radical for God” and completely “sold out.”  Flipping through its well-used pages I had been surprised to find the Old Testament was lined and highlighted, worn and stained from much reading.  The prophetic books had notes all through the margins:  “Watch out!”  “Don’t be foolish!”  “God is not mocked.”   The New Testament was virtually untouched: except for the passages about who would not be entering the kingdom of heaven. 

Those were the days when I knew how to obey God; when my life stretched out before me like a placid lake, unmarred by imperfection and foolish sin.   I had set that Bible beside my adult Bible, the one I read today, and laughed.  These days I was spending much more time in the New Testament, the land of grace.

 I don’t need to wonder what would have happened to that pious and radical teenager had she been given her heart’s desire of decent and orderly perfection, but I shudder to think of it.  A memory surfaces of my younger Law-abiding self:  I am at a young moms’ Bible Study and my newly adopted son, now a toddler, is screaming his refusal to sit upright in a chair.  The other mothers squirm awkwardly as I methodically give the command to “Sit up!” and then hand out spankings as he repeatedly and unwaveringly refuses.  My jaw is clenched and I am determined not to “lose” to this willful boy.  The battle drags on for far too long.  I straighten my shoulders and try to shake the memory.  

When I arrive home, my youngest boy meets me at the door.   “D was mean while you were gone.  And he said the “F-word.”  His eyes are still wet and red from crying. I kneel down and hug him. 

“Are you okay?” 

“Yeah,” he says and sighs heavily, holding open the door for me. 

We go inside and I look on the scene to which I’ve returned.  D is standing on the couch, books are strewn across the floor and there is sharp tension in the air.  D lets out a high pitched scream and jumps down.   My oldest son rolls his eyes and grabs his things to leave the room.  “I’m glad you’re back,” he mutters as he passes me. <br>D is now wrestling with the dogs and yelling, but I have seen him look up at me nervously a couple of times, so I know he is wondering about the appointment.  

When we finally get a moment alone, I wrap him in my arms and whisper, “I love you.”  It is an effort, a gift I give to him.  More importantly it is a gift I give to Him, with deep thanks. Thirteen years of living with this boy has shown me the truth of the Gospel. We are maddeningly persistent sinners, and we are beyond all mortal help.   Yet every day our Father pours out love, gentleness, guidance and undeserved grace.  Tomorrow we will look Him in the eye and disobey.  Tomorrow we will lie and cheat and steal and be cruel and mind-numbingly selfish.  And He knows it.   He will give more grace tomorrow.   

And the tomorrow after that. 

And after that. 

And after that. 

He is near.   

 1 http://fascenter.samhsa.gov/documents/WYNK_Criminal_Justice5.pdf 2 http://www.fetalalcoholsyndrome.org/Developmental%20Overview.pdf  

32 Responses to this post.

  1. *tears*

    Thank you, Tonia, for sharing from your heart and struggles. Thank you for showing me what it looks like to lean into the Lord.

  2. Tonia,
    Thank you for contributing. I’m praying for your situation…it sounds terribly painful. Thanks for being so transparent.

  3. Posted by Left Right Out on December 12, 2007 at 1:20 am

    Hi Tonia,

    My (adopted) cousin is FAS. He’s 10 years old and it can be difficult — adding hormones into the mix will be even more so. May God bless you and your family

    Left Right Out

  4. Wow, yeah, right on!

    Sparrow, do you know this lady’s blog?

    http://fletcherclan.blogspot.com/

    check it out!

    Amie :)

  5. Posted by Lydia on December 12, 2007 at 10:56 am

    Tonia,

    Yes, He is near. Your personal story touches my heart. Thank-you.

  6. Very powerful story and real for you. I pray for much patience, wisdom, compassion and kindness to be bestowed on your head and your children’s hearts and minds.

  7. tears, tears, tears…THANK YOU! First, my sin comes to mind. Second, God’s grace. It’s beautiful to see His grace alive and working through you!!!! His freeing to know I’m forgiven again! I’m thankful YOU have “D” and mostly that He is in a home filled with the Gospel! A mixture of emotions fill me through your story!!! Thank you for sharing!!

    We recently had a pastor join our church who felt he had to step down from pastoring a church because of his adopted son who has FAS, who, to the naked eye seems “out of control”. This, obviously, was a sacrificial decision, and a hard one, but one in love….for his son and the church. God’s grace!

  8. OK…a may have gotten to involved in the story : ) Sooooo….maybe that isn’t your son : ), but the grace bestowed on the woman that is represented here is beautiful! ; )

  9. OHHHHHH! I just realized what was going on! : ) A guest writer on parenting reformed! : ) Sorry! I had just peeked and wasn’t on the “in”! : ) GREAT series! I’m REALLY excited to read more…I’m a somewhat new mommy that has a LOT to learn in parenting!!!!

  10. thanks Tonia. for perspective.

    and your transparency and your courage.

  11. Shawnda, Good to have you here, whether peeking or staying. Thanks for the comments. I know Tonia will appreciate them (when she gets the guts up to come here and read the comments, that is *grins*).

  12. Posted by sue on December 12, 2007 at 5:14 pm

    Tonia, you’re in my prayers!

  13. Oh Tonia…
    *tears*My prayers are with your family and you. He is near. How I needed to hear your story today!

    I also sent this on to my mom…she cares for my brother, who is bipolar and 17 (talk about a bad mix with the adolescent hormones, whew!) and really getting discouraged. I know it will do her heart well to read this, and know she isn’t alone. Thank you so much for having the courage to share this today.

  14. TG,
    .
    I feel like I just received a hug from a long-lost friend..how GOOD to see your name! Thank you.
    .
    Left Right Out,
    .
    You’re exactly right. One of the hardest things is that FAS kids are usually hampered by the fact that their emotional/social age is HALF what their physical age is…so a 14 year old would be a 7 year old with teenage hormones. Scary! Be prepared to have lots of grace. :)
    .
    Amie,
    .
    Thank you! I will definitely check that out.
    .
    Lydia,
    .
    Thank you dear heart. We wobble along on this path together, don’t we? :)
    .
    Barb,
    .
    Your prayers are so appreciated. Thank you.
    .
    Shawnda,
    .
    My heart goes out to your pastor…such choices that must be made. I pray that he and his family get the support and love they need. God have mercy on us..these kids need us so much and it is so hard to help them. I am convinced that it can only be done by God’s hand.
    .
    And yes, seeing my own sin and His grace is a part of what I’m writing here…God does the same and FAR MORE – Hallelujah! – for us on a daily basis.
    .
    Thanks for taking time to comment. :)
    .
    Reneegrace,
    .
    Hi there! How nice to “see” you! God is good and I am so thankful for the way we can learn from each other’s lives and struggles. It’s a gift.
    Squeeze that little one for me. :) I miss little girls.
    .
    Molly,
    .
    Thank you so much for the chance to share our story here. You are gracious and oh-so-sweet and perfectly mahvelous dahling.
    .
    Love, Tonia

  15. Joy,
    .
    We were posting at the same time I think. I will pray for your mom and brother tonight. The Lord knows the mysteries of the mind and knows just what your brother needs…and what your mom needs as well. He is an ever-present help.
    .
    Thanks for leaving a note.
    .
    Sue,
    .
    Thank you so much.
    .
    Love,
    .
    Tonia

  16. Posted by Jenn Turner on December 12, 2007 at 6:04 pm

    Tonia,

    I know I haven’t seen you in a while because of the distance between us, but you are an amazing mother and I know you love D. I have watched you over the years poor your heart into helping him overcome his struggles and I know a lot of your decisions for your family have been based on his needs. I really admire you for your dedication to your son. More than anything else, he needs to know that his parents love him unconditionally and that will not change. I’m proud of you guys for showing him that even when it’s been tough. I’m praying for you.

    Love,
    Jenn

  17. Wow, that is powerful! Thanks so much for sharing!

  18. Molly, My daughter has partial FAS. She doesn’t meet the criteria for full spectrum FAS because even though she is fully grown at 5′ and weighs just a little over 100# she does not meet the criteria for being growth deficient. FAS invades our life more now that she is a teenager. When she moved in with me at 7, she was in kindergarten and developmentally was about 3-4. In some ways even though she was developmentally only about 1/2 to 2/3 of her chronological age, she didn’t seem that “off” developmentally. She is still developmentally behind. At almost 16 she acts more like a 10 or 12 year old, but thinks she should be able to drive a car, date and is planning on attending the local community college at 18.

    When my daughter was younger, she didn’t look normal really. She has classic facial features of FAS. She has really outgrown these and her face looks normal. In fact, she is quite pretty. But, that isn’t all that makes her developmental disability so invisible. My daughter’s full scale IQ is essentially normal. When we were in school, she never qualified for services. When she moves out, even if researth has demonstrated that less than 18% of people with FAS live independently without problems with employment, she will not be able to recieve job placement assistance. She is not eligible for SSI.

    We have given her a private room with her own bath. It is my hope that she will remain at home until she is 25-30. She has said that she will stay at home until she has been able to have a job for 6 months without being fired. I hope that she follows through, but the truth is if she decides to move out, she will be considered competent. We spend a majority of our homeschool day practicing life skills.

    It is good to see more blogs educating people about FAS.

  19. Wow, AWJ. Thanks for sharing.

  20. Acceptance-with-joy,

    Yes, thank you for sharing. I too am so glad to “meet” other FASD parents and see it being talked about in blogs.
    .
    We have a similar plan for our son, as the realization dawns that he is not going to be competent to live on his own probably – although he is also higher-IQ. He has a lot of fear of being “kicked out” when he is 18 (although he won’t be.) He seems to sense that he won’t be ready to be on his own until he’s older (closer to 30, as you said.)
    .
    The kids with higher-IQ’s and hidden disabilities really suffer, I think. They look like they should be able to handle it all and they are nowhere near being capable. And as you said, there are so few services in place for them.
    .
    You and your daughter are in my prayers tonight. May God give you much wisdom and patience and unending grace.
    .
    Thanks for sharing.
    .
    Tonia

  21. Posted by Atlantic on December 14, 2007 at 10:49 am

    I read this on the first day it was posted and I’m still speechless.

  22. I know. Me too. It’s beautiful.

  23. I know nothing of the personal struggles you must go thru every day, but I truly felt the Lords soirit when I read your story….I believe it is a combination of your “from the heart” style of writing and the absolute ring of unadulterated truth……I once worked in a youth home for young girls who had comitted a misdeamenor or felonious crime and were to young to be formally processed thru the judicial system,so i have a very SMALL

  24. taste of what you must be dealing with….much love and strength and prayers to you along your journey….He is challenging us always, and it is obvious you are rising……you are an inspiration!

  25. [...]  FAS Teenagers, Adopting Special Needs, and Loving in the Face of Unloveliness [...]

  26. Posted by Gabriela on December 22, 2007 at 5:17 pm

    If anyone is interested in learning more about FAS, I read this amazing book in my social work program, called “The Broken Cord” by Michael Dorris. It really opened my eyes to this rather widespread, but little known issue. I have immense respect for anyone serving and loving a child with this difficult condition, thank you for your story, Tonia, and the way in which Christ’s love shines through you.

  27. [...] Guest post (from a treasured friend of mine, Tonia at Study in Brown):  ”FASD Teenagers, Adopting Special Needs and Loving in the Face of Unloveliness“ [...]

  28. I wonder how much of what is thought to be FAS really is attachment disorder? My cousins lived with me at one point (when I was a preschooler), and neither has FASD but they have many of these traits.

    Aggressive with others?”

    The younger one would throw several-hour extreme tantrums, and hit and shove my mother while screaming obscenities. The older one was more subtle and manipulative, but was very emotionally cruel. Both of them also sexually abused me.

    “Lies or makes up stories?”

    Both of them showed this to a great degree. The older one once insisted on getting thin little gloves instead of nice warm mittens, then told all her friends that my parents refused to get her warm clothes. The younger one set a paint can on fire in the backyard and then, to explain his singed hair, he claimed he’d been helping to put out a house fire.

    “Has difficulty getting along with peers?”

    This one less so. The younger one got into lots of fights, and both hung around with bad crowds, but were much more socially skilled than FASD kids, especially the older one.

    “Steals?”

    The younger one stole constantly. I don’t know about the older one. The younger one stole beer from the local store, money from my father, all sorts of things.

    “Uses inappropriate or vulgar language?”

    The younger one swore and insulted people mercilessly when he was angry, as described above. I’m not sure about the older one.

    “Feels isolated, lonely, misunderstood?”

    I don’t know, but probably yes for both, especially the older one. I found a list of traits of borderline personality and asked my parents with each one if she had it, and one she had was ‘chronic feeling of emptiness’

    “Expresses suicidal thoughts?”

    I think the older one did. I don’t know about the younger one. I wouldn’t be surprised with either of them.

  29. Ettina,

    It is so funny! With my FASD glasses on, I always wonder how many kids diagnosed with Attachment Disorder really have FASD. This is probably because Marissa was first diagnosed with anxiety disorder and attachment disorder, anxious ambivalent type, and a non-verbal learning disorder.

    A physician will not diagnose FAS unless the child has full spectrum FAS (growth impaired, neurobehavioral problems and facial features typical of FAS) or there is confirmation of prenatal exposure to alcohol.

    I do; however, know a LOT of adoptive parents who parent their child “as if…” because the parenting techniques work for their child.

  30. Good thoughts, you two. I’m so glad you both are piping in here. When folks find this post via googling info on how to parent kids with FASD, they will have your helpful comments and thoughts to help, and that’s awesome!

  31. Posted by David Kellogg on March 23, 2009 at 6:09 am

    Wow…Thanks for some perspective. My wife and I are currently going through a really challenging time with our FAS daughter, who just turned 11 and just started her period. She is growing more and more angry and more violent. We’ve called the police out to our home twice recently and had her admitted to the psych ward at a local hospital for a 5-day stay.

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