FASD

FASD (Fetal Alcohol Spectrum Disorder) is hard, frustrating, preventable, it involves brain damage, rages, pain, regret, sorrow and even joy. A group of mom's shared what they find most difficult when parenting children with FASD. They gave me permission to share their responses on my blog.

- The broken heart of knowing what might have been and the pain of knowing what my child was robbed of
- The need to protect other family members from impulsiveness/bad choices
- Teachers, professionals, family etc who do not understand FASD. They haven't researched it and are unable to handle my child yet they judge my parenting
- Unpredictability
- No longer being able to be a part of society. We feel like we need to exclude ourselves from parties, events, gatherings, shopping etc. We were always a couple who did everything together now we have to take turns. Our child cannot handle social situations and we cannot leave him with a babysitter.
- Trying to figure out how to get him out on his own
- Outsider judgement
- Figuring out how to get him to make good choices and stay safe
- The ignorant outside world where our children are to live someday
- School
- Always having to be alert for tantrums and new fears that come out of nowhere.
- Persevering ...the fact that it is unknown to those around us and having to continue educating them
- Maintaining energy and patience
- The relentless arguing
- Regressions, not being able to trust him, not knowing if he is lying or telling the truth. Fear of the future, but mostly the battle between myself and family who think his diagnosis is just an excuse for his behavior
- The fact that everyone see's how good my child is doing and tells me to back off, not understanding the reason she is doing so well is because I am right here by her.
- The lack of sleep
- Watching my 2.5 year old surpass my 8 year old in abstract thought and comprehension of movies/reading, like being able to predict what will happen next
- The fact that in spite of all we know, this continues to happen over and over again...think of what you are doing to your child
- My children look normal and are expected to act "normal"
- The disconnect. The look of understanding when they haven't a clue what you just said.
- The need to eliminate expectations
- Always walking on eggshells because you just never know what to expect
- Letting go
- Attitudes
- Worry about the teen years
- Lack of support in the school system
- Not being able to make everything ok for my child
- Communication difficulties
- Daily regression, lack of self regulation
- Getting people to understand FASD is a brain injury
- Trying to discern what is brain injury and what is willful behavior
- Needing to constantly watch my child
- Feeling like a bad parent because others just see the behavior and judge

I hope to follow up with posts on how to support families who have children with FASD, how to enlighten the general public and tips to make life easier for both the child with FASD and their parents.

*thanks to each person who contributed, may God bless you with a peaceful day











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Picture Post

The braces are off.....

.....and the retainer is in!

Lia ate goldfish crackers while Tristan had his braces removed

This is the icy lane Lia and I walked up yesterday. It isn't any better today so the school van is parked at the bottom of the lane once more.

Sunday evening we took the children to the warehouse at PaulB. They rode bike, rip stick and rollerblades. The getting water from the cooler was the highlight of the evening. 

Icy Monday

We have been blessed with an icy Monday and it is my turn to drive the school van. Big van's were never intended to drive in snow and ice. This is the only time of year we dislike living on the "North Side of the Mountain" as we call the hill that we call home. 
   The children were cheering when they found out that school had a two hour delay. Tristan was sure they would cancel as our drive was so icy. He kept asking how we will get out the lane and I told him I wasn't worried, we can always slide down the hill. He was like, "But mom, the drive is covered in ice, all the way down to the road." I dismissed his report as he can be overly dramatic. I changed my tune when we slid from side to side and out onto the road. He gave me the grown up look he has recently acquired and said, "I told you it was icy!" Yes son, you did and I will take you more seriously next time.
   I parked the "raft" at the bottom of the drive and Lia and I walked up the lane. She thought it was a great adventure, mom wasn't quite as excited. My plan is to take the golf cart down to the van along with a few buckets of ashes to put behind the van tires so we can get out of the ditch and go get the school children
   No pictures today as the computer I usually use to post needs some repairs and I am not tech savvy enough to figure out how to get my pictures onto another computer.
    Stay safe!

Strawberry Jelly In January

Guess what Lia and I are doing today? Making strawberry jelly! Almost 2 years ago I put away lots of strawberries. I made a lot of jelly then pureed the remaining strawberries and put them in freezer containers. We finally used up the last container of jelly the other day. While looking through my freezer this morning I came across these pureed strawberries and suddenly Lia and I were making jelly!

Lia had fun stirring the jelly

Helping mom....

....it is even more fun to lick the spoons!

I made three portions because I had three boxes of Surjel in the freezer. I didn't get much for the mess I made but it was fun anyway.

The other evening Dean worked late. He wasn't home in time for supper which really upset the three little ones but I told them he would be home by bedtime. Well, he wasn't. Things didn't go as planned so they were fast asleep by the time daddy came home. I told Dean he has to give Kiana and Joseph a kiss, even if they are sleeping. The next morning both first graders were in lets just say, a bad mood. They were upset that daddy hadn't came home. I told them he had been home and gave them each a kiss before he went to bed. That made them smile but there were still tears so I called Dean and he talked to each of them. They went to school with smiles and I forgot about the whole thing until that evening. Joseph came home from school talking loudly, crying and yelling while Kiana picked a fight with anyone who crossed her path. I was at my wits end, nothing calmed them down. When Dean came home for supper Lia looked at him and said, "You came home?!" Turns out all three figured daddy wasn't coming home anymore! The poor children! I thought they trusted us further than that. We obviously have our work cut out for us. Sometimes I wonder if they will ever fully trust us to meet their needs.

Giveaway Winner

and the winner is:

CHARLENE WEILER!!!!!

Where Was My Faith

    Most years find me wandering aimlessly on January 2.  I love the Christmas Season so much I have to be careful I don't get lost in the secular celebration and neglect to honor and glorify my Savior who make's Christmas worth celebrating. I love baking cookies, wrapping presents and giving them, buying special treats, reading the Christmas story to my children and enjoying the lights. All the hurry and flurry energize me unlike the rest of the year when it bogs me down. 
   This year was different though, the weeks leading up to Christmas were spent sitting on the sofa with a feeling of doom and discouragement. The children sensed my mood and fought and bickered pretty much nonstop. Lia whined and cried and Tristan picked on his younger siblings until I seriously thought I was going nuts. I cried and tried to pray but my prayers seemed to go no higher than the ceiling. It was a time of discouragment and I became seriously concerned that I was going to sink into a deep depression. I could "see" the edge of the black hole of depression. Dean and I had the "Am I going crazy" discussion frequently. Each time he told me if I am so concerned that I am loosing my sanity, then I just might. :) After that admonition he would tell me to go to bed and sleep because I am overtired. 
   Christmas came and went. Braden came home and my fears that he would be a lovable little chap who bonds with us when we are finally feeling like we know where he will spend his future was felt scary. For so long things were in limbo concerning Braden and now that we have a plan, we feel more secure. (If Braden were to begin making progress again we would gladly rethink our plan) Neither did we want him to be in trauma mode the whole time. He was in neither place. He insisted on staying on the very edge of family life and no amount of bribing could draw him in. Braden stayed pretty calm all the while he was home but didn't allow us to break the walls of fear around his heart, enforcing that, yes we are making the right choices for him. We had a better Christmas than we could have hoped for. 
  On Saturday when I took Braden back to TAP I told Dean that I will probably be spending the next two days flat on my back. My muscles were aching and I had a tension head ache. Guess what? I felt fine and have felt fine ever since. There is joy in life again, the dread and fear of the unknown is gone. We came through that home visit just fine. Why? Because people prayed and went out of their way to let us know they cared. God heard those prayers and graciously answered them. Where was my faith? Why do I allow fear to get the best of me?
  God has never let me down before so why do I doubt when things get tough once more? I am doing a 20 day Bible study called: You Are Not Alone, You Were Made For Hard Things, By Havilah Cunnington. Yesterday she talked about the verses in James where it talks about pain and how it brings about mature faith. God didn't create our bodies to experience pain, in the beginning we were perfect, then sin entered the world and along with sin came pain and suffering. God uses that suffering to bring glory and honor to his name. If we draw close to God in our suffering he will draw nigh to us and increase our faith. I know that but still seem to think I have the right to fight and struggle when I encounter pain. After I wear myself out asking why and fighting against the fear and agony of pain, I can rest in God's love. I am anxious to continue the study and see what God brings about. 
   All this to say, Don't let fear reside in your heart, GOD IS FAITHFUL!

Our God is faithful but there are times when you are going through the dark of night and there appears to be no hope in sight. When going through such dark places you need God's people to pray for you. For protection from fear, for deliverance from the evil one and for the truth to prevail. Such is the place of a friend of mine. I feel so badly for her and her husband will you please join me in praying for them? here is the link to her latest blog post.

Recipe's

Happy New Year! I should have something deep and moving to write about but my mind is blank so I will share some recipe's I tried this week.

Pecan Pie Squares

Crust:

2 sticks butter

          2/3 cup brown sugar

  2 2/3 cups flour

   1/2 teaspoon salt

Topping:

 4 ounces butter

      1 cup brown sugar

1/3 cup honey

            2 Tablespoons honey

        2 teaspoons vanilla

              2 cups chopped pecans

Preheat oven to 350, line 9x13 pan with foil leaving 2 inches hanging over the sides

Cream butter and brown sugar add flour and salt and mix till crumbly

Press into foil lined pan and bake 10-15 minutes or until golden brown

in a heavy saucepan combine butter, brown sugar, heavy cream and honey. Bring to boil stirring all the while, boil 1 minute and remove from heat then add vanilla and pecans

pour filling over crust and bake 18-20 minutes

Cool bars completely and remove foil then cut into squares.

These bars are delicious with a cup of coffee. I couldn't leave them alone so I put them in the freezer.

Have leftover candy canes? Make a chocolate peppermint cake!

I made it the simple way using a chocolate cake mix and since I was in a hurry I used my regular vanilla icing recipe. Next time I will find a fluffy whipped cream frosting. Bake your cake in two round cake pans and layer the cake, frosting and crushed candy canes. Simple but good.

 A friend shared a simple cinnamon roll recipe. I tried it out yesterday. Friends from church got together last night and we were all to take a finger food. At 4:00 I got the crazy notion to make some cinnamon rolls to take along.

I also mixed up a Herbed Cheese Bread Ring for supper. I say my daughter is impulsive but there is a good chance I am just as bad as she is. :)  To make the cinnamon rolls, I used a donut mix I found at the local grocery store and added yeast and water. You let the dough rise for an hour and then to roll out and top with cinnamon and sugar and roll up like a jellyroll. So much faster than the recipe I used before.