I Wish We had Known

I wish I would have known that adoption was about brokenness, about fears, tears, grief and loss. I wish someone would have told us the children we bring into our home and yearn to parent won't view us as loving, instead, they viewed us as the "people who took me away from my mom and dad."

I wish we would have known that we would never, ever be able to meet their needs. They come from a place of hurt and pain that I cannot understand. I have never been hungry, crying for food but left to suck my fist in a vain attempt to fill the empty gnawing in my stomach. I don't know what it is like to cry in fear or pain and have no one come to offer comfort and security. I had a mom who loved, cared and nurtured me. A mom who was taught by generations before her how to love a care for a child. My children come from a line of broken homes, substance abuse and court documents, restraining orders, parole officers and incarcerations. I had no idea how to fix such hurts and generations of pain multiplied into the little people we brought into our home. We thought the love, food and safety we had to offer would heal all ills.

I wish we had known how much damage one person's emotional terrors could do to a whole family. How their inner pain could make you doubt your very presence in this world. 

I wish we would have known how woefully inadequate we were. We didn't have any experience helping children who self harmed. Love doesn't fix that. Love is a bandage at best and causes more harm at worst. I didn't know.

I wish someone had told us that it would take years and years of love, sacrificial giving, a pouring out of all ones mental and emotional resources and still falling far short of meeting even the basic needs of a hurting child.

I wish someone would have told us that it can take years and years of work to help the hurting child you brought into your home to gain even the most rudimentary level of trust and how one thoughtless action could bring the fragile walls of trust crumbling to the ground, leaving you weeping and despairing of ever gaining the trust of the little people entrusted to you.

I wish we had known how harmful alcohol can be. No one told us what to look for. I wish we had known years ago what our children were up against. We would have pushed so much harder to get them help.

I wish we had known just how devastating it can be to have a child reject you after you gave all you had and kept pouring into their lives until you were so bone dry yourself you were tempted to run away from it all and never come back.

I wish someone had told me that the very services and agencies who were supposed to have our backs may turn on you at a moments notice if they don't agree with your decisions even if the decision was made after many prayers and tears.

I wish we would have been better able to understand the meaning of the "Roller Coaster of Adoption and Foster Care." We watched others and thought we knew but how clueless we were.

I wish we had known how to protect our healthy children from the ones who were unhealthy. Would have known how much damage a hurting child can cause a family, how one child can erode the very foundation of family life.

I wish we would have researched trauma, attachment and bonding so we could have been therapeutic parents from the very beginning.

*coming soon: I am thankful we experienced these things because..

FASD Link

Here is the link for an excellent article on behavioral management for the child with FASD. I will be printing this out for my son's teacher and taking it to our next meeting, maybe we can figure out a strategy to make things easier for everyone.

Joseph built this truck/tractor and wanted me to take a picture of it

This came in the mail the other day. 

...And this is Honey Bear. Dean helped the children build him then sprayed him with paint.

Tristan playing in the snow

FASD Training

My goal for this blog was to enlighten the public about Reactive Attachment Disorder and the challenges parents face when parenting a child with this disorder. I think I need to rewrite my blog goals because I foresee myself writing a lot more about FASD than RAD in the coming months and years. I found this incredible FASD training on youtube and my eyes have been opened to the responsibilities that are before people who are raising children with FASD. I want to share a few highlights I got from listening to this training, it is almost 2 hours long and a good deal of it was statistics and facts about FASD and those who are affected by it.

- Parents will be frustrated when attempting to parent children with FASD and for good reason as it is a lot of work caring for a child with a disability as complex as FASD (These families often look a bit crazy to the outside world) So glad to finally have a valid excuse. :)

SUPPORT FOR THOSE PARENTING FASD CHILDREN
-primary diagnosis
-ongoing support for coping
-respite even when not asked for
-therapy for grief/loss work at many stages of development
-a case manager
-clarity of expectations for the child
-connection to other caregivers

-getting a diagnosis for a child we suspect has been prenatally exposed to alcohol is not optional

-we owe our children the privilege of having a diagnosis

-having FASD can be catastrophic without support

POSSIBLE PRIMARY DISABILITIES FOR THOSE AFFECTED BY FASD
-auditory memory impairments for verbal recall
-decreased verbal and nonverbal fluency
-information processing disorder
-learning impairments
-impaired visual/hearing
-impaired motor development
-behavioral impairments
-impulsivity

Primary disabilities are what come with the territory of of having been exposed to alcohol

POSSIBLE SECONDARY DISABILITIES
-mental health problems (could also be a primary disability)
-disrupted school experiences
-trouble with the law
-need for confinement
-abuse of alcohol and other substances
-having children they are unable to care for
-problems with employment
-homelessness 
-lack of consistent ability to meet their needs

The above list is why parents and children affected by FASD need a plan. Without an expectation of what is coming next developmentally and behaviorally, the family is left adrift. When a plan is made, we can work on creating the environment the child needs ahead of time thus being ahead of the game versus scrambling to catch up. A plan will also keep the child safe as children with FASD are at high risk for unsafe behavior/addictions and the like.

Ironically children with FASD have expressive language skills well beyond their age. On the surface it sounds like they have it all together so we often make the mistake of assuming that since the child is making logical sounding comments he understands what he is saying. This remains the single greatest challenge for those working with FASD.

-some children with behavior problems do not have the mental capacity to want to "shape up."

-parents must remember that the childs behavior isn't willful disobedience it is a result of a brain injury.

-children are "all about me and what I want in the moment" people with FASD stay in this place until well in their 40's

-children with FASD need a much more rigid and sheltered environment than their peers of the same age. Some children can manage getting on the bus and going to school, for others that is to much for them.

-we need to think, "What can I do to make it possible for my child to go through the school day with out getting into trouble."

-NEEDS OF AN FASD CHILD
-diagnosis
-assessment of strengths and limitations
-increased and ongoing supervision and structure
-living in a family that understands the disability
-advocates for at home and at school
-involvement of a care management team
-medication
-rehabilitation (speech/language, OT)
-ongoing Neuro/Psych evaluations
-Individual Education Plan
-Functional skill building
-behavior management focused on preventing negative behavior
-prevention of secondary disabilities

The training was directed to those parenting adolescents but I felt there was a lot of good information for those of us who are parenting younger children. It also opened my eyes to why Joseph faces some of the struggles he does and what our responsibility is as his parents. We have been advised to get Joseph into the mental health system now so when problems arise we are already in the system and don't have to wait months for help when we may be in crisis. I hesitated because of the bad experiences we had when we sought help for Braden. Also having CYS tell me I am just looking for problems in my children makes me second guess myself, what if others accuse us of the same thing and we are accused again?

here is the link to the training I was listening to


*I also want to clarify that I am not asking for help respite or otherwise, I simply related what was shared. 

Another example of FASD:
Joseph was in a funk again and after days of going in circles trying to figure out what was bugging him he told me he is afraid I will die and then no one will come to school and pick him up. He was obviously trying to imagine living at school. I said if I can't pick him up, someone else would be there. He quickly shot back, "What if you had an accident and no one knew you were dead?" I told him someone would look on my license and they could figure out who i was. I also showed him the letters ICE (in case of emergency) behind Deans name on my phone and explained that anyone who looked at my phone would know to call daddy. The look of relief he got was painful to see! I asked him why he didn't tell me earlier what was bothering him and you know what he said? "I didn't know what was wrong before." How frustrating it must be to feel upset about something but have no idea what that something is!

Daddy and Lia relaxing

Snow

Yesterdays snow made the drive slippy again. The ice from a week ago had just melted off. We are back to parking the school van down near the road and using the golf cart to go up and down the drive.

Kiana cleared the walks

Hard at working shoveling a path through the yard.

I love when the snow covers the drab earth.

Our dogs

Here Am I, Send Me!

God has been convicting me of my attitude concerning our children's special needs. I get so tired of the constant neediness, reteaching a concept over and over again, only to find the child has retained less than 5% of what I was drilling into him. Tired of trying to figure out what is causing negative behavior, if my children are telling the truth or creating another elaborate lie. Why is it that children with FASD can tell a complex lie but do not have the ability to tell me the truth? 

   Our Sunday School lesson was on Job and how he questioned God and became discouraged. Job couldn't see what was going on in the spirit world. At that time he didn't know God had told Satan, "Consider my servant Job...."  Would I stand or fall if I were in Job's position? Sunday evening we heard about Moses and how he had to go back to Pharaoh and tell him all the things that would befall him if he didn't let the Children of Israel go. Moses had left Egypt after killing a man and probably thought he would never go back but God called him out of the desert and told him to go to Pharaoh. Moses went. Am I willing to say, "Here am I, send me?" Am I willing to go where God send's? I know I have been fighting against this road God has called us to walk. Not that I don't love my children but sometimes I just wish the days weren't so hard. I spent Monday and Tuesday mulling over everything I had heard on Sunday.

  This morning for devotions I did a chapter in the book: I Can Do Hard Things, by Havilah Cunnington and the lesson was called: Get Off The Couch.... the couch of self pity where we sometimes find ourselves resting so comfortably. We sit there and despair, asking "Why me?" It's a place where the enemy wants us to believe God somehow actually gave us more than we could handle and instead of being a Father to us, we were left to depend on ourselves. The enemy likes to imply to us that God is not a good Father but rather a forgetful Father. Someone who likes to give us more than we can handle, only to watch and judge us for our lack of ability to follow through and do things well. It's a lie that we can easily buy into. The enemy likes us to stay in our pit. He will try to get us to buy into any lie he can to keep us bound, never victorious, and always feeling defeated. When we begin to expose the lie, we understand the Bible says it rains on the just and the unjust. We are not being punished but simply live in a fallen world.

  I wish I could copy the whole chapter here but since I can't here is the link to buy your own copy of Havilah's book. I am sure you won't be disappointed!

  All that to say, God has been working in my heart and as humans do, I had high ideals. I already failed miserably but with God's help I will try again tomorrow. The following song is a favorite of mine. I need to print it out and hang it on my fridge as a daily reminder to depend on His grace rather than my weak strength.

He Giveth More Grace

He giveth more grace when the burdens grow greater,

He sendeth more strength when the labors increase;

To added affliction He addeth His mercy;

To multiplied trials, His multiplied peace.

When we have exhausted our store of endurance,

When our strength has failed 'ere the day is half done,

When we reach the end of our hoarded resources,

Our Fathers full giving is only begun.

Fear not that thy need shall exceed His provision,

Our God ever yearns His resources to share;

Lean on the arm everlasting, availing;

The Father both thee and they load will upbear.

His love has no limit; His grace has no measure,

His pow'r has no boundary known unto men;

For out of His infinite riches in Jesus,

He giveth and giveth and giveth again!

Fun Days

Lia and I met my friend J and her son on Thursday and went to the Wyomissing Farmers Market. We enjoyed coffee n donuts there before heading over to the mall to do a little shopping. The morning was short but fun.

Lia and Caleb are both 3 years old. It was fun listening to them chatter away.

On Friday my sister and I went to September Farms for lunch. The girls (and the mom's) enjoyed all the yummy samples set out around the store. I told Dean it is good the store is near here as there were so many things I would like to buy.... flavored mustards, dip mixes, fresh baked goods, orange curd, caramel dip.. and you can't forget many different flavors of cheese. Lia and Alisha cleaned up the last two samples of chocolate marshmallow brownie's.

Bethany enjoying her french fries. 

FASD/Excema

Joseph has battled excema all his life. When he came to us he had patches on the top of his feet and would occasionally get small spots on his arms and legs. I tried to keep lotion on him so his skin didn't become to dry. The past 1.5 years have been awful. I have tried all kinds of creams, lotions and potions, well maybe not potions but anything I thought might be helpful. 2 weeks ago he broke out with a bad rash again. He scratched it till it was raw and oozing. I put creams on him three plus times a day. First aid cream, coconut oil, lotion a natural cream we bought and leftover steroid cream from a previous outbreak plus gave him allergy medication. In about three days his skin looked better than it has for a long time. 2 days ago he broke out again. Nothing has changed in his diet, I use the same laundry soaps. The only common denominator I could figure out was that he was "in a funk" again. That is the best way to describe his moods. He is irrational, unreasonable, angry, cannot follow simple commands, gets angry at everyone who crosses his path.... I have wondered before if it is possible his moods have something to do with his excema outbreaks as our bodies produce "stress hormones" when we are stressed out. Could it be he was allergic to stress? It sounded a little far fetched so I asked my FASD mom group and guess what? We were right on target! So glad to have an answer. But as usual, solving one problem means another just takes it's place. Joseph's brain doesn't work like a healthy brain and he comes up with the most absurd things to worry about. No amount of proof or talking will make him think differently once his mind is made up. For instance awhile ago he was worried the school would burn if he stretched. It took him days to be able to process his fear enough to even tell us about it. That was several months ago and he brought it up again the other day, he is still worried about it! Joseph has had a rough time of it for the past 3 days but I have no idea why. He can't or won't tell me and it is probably something like the school fear so there is no way I will be able to guess what is going on until he talks. In the meantime we hunker down, and try to defuse the tantrums, keep his world small, get him to bed in good time and talk, talk, talk.. oh, and put cream on his excema and continually remind him not to scratch. He says, "Ok mom" and the words have barely left his lips before he is scratching again. When I ask him what I just told him, he hasn't the faintest idea. When I become frustrated with his on again, off again ability to function I remind myself he is not doing this on purpose. When Braden was home he would do things on purpose just to keep up the wall around his heart. It hurts much worse when your child is acting out because he wants to hurt you so you don't become close than it does when the child is acting out because of his inability to function.