The Crash Test Dummy Family — 5 Minutes for Special Needs

The Crash Test Dummy Family

by Melody



                               

All week the plan was to tell you a humorous story today about the boys’ not-so-special language.  Humor is scarce right now. 

As I write this the pain and tears are fresh from having been verbally and physically attacked by my thirteen year old son.  Followed by his complete emotional collapse in my arms while he sobbed and heaved words of remorse…

"Mom, I am so sorry.  Mom, I love you so much.  I am so stupid.  I am so bad.  Mom, I am so sorry.  Please still love me."

I hold him and wish desperately to make it all go away.  I kiss his head.  I tell him "I love you.  Nothing will ever make me stop loving you.  You are precious to me. I love you always."

My heart hurts because I know how much his heart hurts.  I know how tormented he is.  I know this is his life…forever.  I know this is our life until we are parted by the highly probable act of his running away or the death of one of us.  Fetal alcohol syndrome sucks, and it does not go away.  You teach and re-teach and go to therapy and give medication and pray and hope and teach some more.  But mostly you pray.

You spend the life of your child trying to encourage his brain to re-wire itself to function with a smidgen of impulse control.  Nothing changes.  It only escalates.  You keep praying.  You keep loving him.

There was no big issue involved, no punishment, no loss of privileges.  He simply wanted to go to a friend’s house and the answer was no. 

For a person living with fetal alcohol syndrome life is always now, this moment; there is no time past this moment.  There is no impulse control.  So being told no is literally the end of the world for him because his alcohol-damaged brain cannot see past one moment to the next…to him his life ends now with the word no.

My son is no monster.  He is a little boy growing into a young man, and the hormonal changes of the teen years alone would be enough of a challenge. Yet because the woman who carried him in her womb consumed alcohol during the pregnancy, he has an additional burden.  I remind him that this problem is not his fault.  However in virtually the same breath, I have to remind him how hard he must keep trying to control himself and that it will never be easy.

My tears are falling and the laptop screen is a blur…

As a crash test dummy family, once again we gather our luggage, repack the car, strap the family in tightly and head back out on the road…knowing the next crash is around the corner.  Never knowing at which turn it will happen.

It’s what families do, and I know you understand.


Melody can be found writing here at 5MFSN every Tuesday in addition to hosting Special Exposure Wednesday. She can also be found at Slurping Life and what i think.

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1 Deborah August 5, 2008 at 12:06 pm

Indeed I do understand. My youngest daughter is diagnosed with FAS and my oldest is diagnosed with reactive attachment disorder. The outbursts from both are similar and just as you described. I’ve lost count of the injuries I have sustained trying to convince them that I will always love them, no matter what.

The not knowing when the outbursts will happen is, I believe, almost worse than the outbursts themselves. We can’t prepare – we just cope the best we can.

Hugs to your whole family…

2 Kirsten August 5, 2008 at 12:31 pm

My heart goes out to you! I’ve never dealt with what you experience, but I think as parents of kids with special needs we all connect on a certain level and understand the emotional rollercoaster that comes with caring and loving a child with all you have, yet knowing there are some things you just can’t fix.

We’re parents and for the most part we take each situation as it comes but every now and then we just need a good cry. I’ve been there and I feel for you.

Take Care
Kirst

3 Bobbi August 5, 2008 at 12:49 pm

((HUGS)) I’m so sorry you and your family are going through so much. I wish I had something better to say, but I’m not that great with words. I will keep you and your family in my prayers. I think you are a great inspiration to us all.

4 jollyholly August 5, 2008 at 1:07 pm

You’re doing a wonderful job giving your precious, hurting son so much love and security. Even though our kids don’t have the same diagnosis I know what it’s like to have my child turn on me because she doesn’t understand and can’t control herself; with her I treasure every smile or hug because they are so rare. And sometimes I just really need to hear, “It IS hard, and you’re doing a great job, and every tear is thoroughly worthwhile.” So that’s the verbal hug I pass on to you today.

5 Melissa August 5, 2008 at 1:08 pm

I can only imagine how difficult it must be for all of you. My heart and prayers go out to you.

6 Melody August 5, 2008 at 1:10 pm

And I hug each of you right back. Connection to others is so important for any parent…for any person. Thank you for your words of support.

FYI…At this moment, the same boy is making me laugh my head off.

7 Stacey August 5, 2008 at 1:16 pm

Prayers for you and yours–

I think that loving these kids, is like a roller coaster ride– we love them in the up’s the downs and even the in-betweens with the same strength– yet we are never sure that they know our love is constant and un-yielding

Every tear is precious–
just like every smile or hug!

8 Melissa August 5, 2008 at 1:53 pm

Melody – you and your family are in my thoughts today and every day.

9 Jenny August 5, 2008 at 2:18 pm

Oh Melody, what a challenging and emotional situation for you. I’m sure your heart feels broken into a million pieces following one of those episodes. Bless you for being such a wonderful mother. Remember John 16:33. I will pray for you and your family.

10 slackermommy August 5, 2008 at 2:35 pm

Boy, do I get this post. My daughter doesn’t have FAS but she does lack impulse control and the remorse that follows. It breaks my heart to watch her get so upset with herself over something she can’t control. I’m so glad we are sharing these stories not only to learn from one another but also to know we are not alone.

11 Jen August 5, 2008 at 5:56 pm

I wish there was something I could do to make this easier for you and your boy but since there isn’t I’ll just say that you’re doing a good job. A great job. An AMAZING job. Your love for your son brings me to tears. I just wish all children had someone like you in their lives.

12 Barbara August 5, 2008 at 5:59 pm

No one could not understand; you explained it all so well. Blessings on you and your family.

13 Nicki August 5, 2008 at 6:59 pm

It seems that, for people with things like FAS, bipolar, even ADHD and autism, emotions are just so RAW. Like, a typical kid might get told that they can’t go to a friend’s house, adn they might think, “My family sucks” and they might stomp around or something. But for kids with certain special needs, the emotions and reactions just come CRASHING to the surface! Thats a lot for a kid to have to learn to manage! 🙁

14 Stephanie August 5, 2008 at 7:01 pm

Melody, all our prayers are with you and your family. God loves Lee so much that He gave him a family that truly does love him “no matter what.” And one that will help him become the best man he can be. Thank you for sharing your trials so that others can understand.

One of my favorite verses when I’m struggling is Lamentations 2:19 “…pour out your heart like water before the Lord; lift up your hands to Him for the life of your children…”

15 Gezina Shaw-Butler August 5, 2008 at 7:24 pm

Hi Melody,

A difficult day for you but lucky for Lee that you are his Mom and can cope with it and the fact that he knows that you still love him regardless.

Thinking of you and your family in my prayers.

16 Debbie Yost August 5, 2008 at 7:48 pm

I’m sorry you are having such a difficult time right now. I cannot begin to imagine how difficult this must be for the whole family! Sending you hugs and prayers!

17 Marla August 5, 2008 at 9:43 pm

Hugs. Your love is evident.

M does not have FAS but she often has the ups and downs you describe from her Chromosome Disorder and Autism. It is so hard and exhausting. I hope you can get some time to yourself to regroup.

Sending prayers.

18 Julie August 5, 2008 at 10:11 pm

My heart goes out to you both. Stay strong- you’re such an inspiration.

Hugs.

19 Trish August 6, 2008 at 12:07 am

{{{HUGS}}}

I am praying for you and all of your guys.

20 Lori August 6, 2008 at 10:59 am

I’m sorry. My heart feels for all of you. Thank you for sharing suh a hard thing, I was very touched (crying too), reading your words of strength and understanding for your son. He is very lucky to have you as a Mother. We will keep you in our prayers.

21 Melody August 6, 2008 at 11:22 am

It is so good to be with a group of parents who don’t judge, but understand and empathize.

I’m sorry that I haven’t responded to each of you individually with a blog visit, but it is not because of lack of appreciation for your thoughts, hugs and prayers. I’m just tired and dealing with stuff. 🙂

22 Stacy August 6, 2008 at 3:25 pm

Words are often elusive for me when I read your posts about your boys. I wish I could be there with you and give you a big hug, but know that I can see your strength and love for them…ALWAYS.

Yet again life has proved that it is not fair and it is the innocent that invariably suffer. I will pray with you, my friend.

23 Micki August 6, 2008 at 4:27 pm

*hugs* to your son and your family. I can’t even imagine the heartache that would come in a situation like this. I’m so glad to hear that you tell and show your son how much you love him.

I often wish that things weren’t so difficult for my kids. But they almost always surprise me. They’re so much stronger than I am . . .

24 Adventures In Babywearing August 6, 2008 at 9:09 pm

Oh Melody, this is beautiful. My heart is thinking of you right now.

Steph

25 killlashandra August 7, 2008 at 12:54 pm

I’m glad you guys had the reconciliation moment after the angry words. I think that means more than anything. I have my own heart pangs with my step kids when they through a fit about not being allowed to do something but in the end I haven’t heard those three little words I love you in a long long time from either of them. Even when I hug them and kiss them and reassure them I still love them even when their being hormonal little terrors.

Yep I know about repacking and moving on though.

26 Christina August 7, 2008 at 5:37 pm

Oh Melody! How me heart aches for you. As always, your love and wisdom will prevail. Hugs!!

27 Mozi Esme's Mommy August 9, 2008 at 7:15 am

What a heart-felt post. Hugs your way – your son is blessed to have you in his life, and I know you’re blessed, too.

28 Evelyn Esmailka from Allakaket, Alaska October 2, 2009 at 2:30 pm

The things that you are talking about, loss of control, it reminds me of some students that I’ve had in my classrooms. I’ve tried everything and was at loss, until I had more training and worked with the parents. My heart goes out to you and others. God Bless.

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