Joseph's Appointment At Kennedy Kreiger Institute

Yesterday was Joseph's long awaited appointment at Kennedy Kreiger Institute. We waited 6 months plus for them to call to schedule an appointment as they only schedule three months ahead. In September they called and scheduled an appointment for December 15. At the time, December seemed like a long way into the future but as always, time moved on and now it is history.
  We were hoping for a diagnosis of FASD but are struggling to get it because Joseph does not have the facial abnormalities that typically go with the fetal alcohol. Someone asked why we are seeking a diagnosis, simply put, we want a paper trail as well as a name that can clarify Joseph's actions if the time comes when we need it.

This isn't a very good picture but it will give you an idea what the children's waiting area looks like. Joseph loved it.

   A year ago I took Joseph to CHOP (Childrens Hospital of Philadelphia) and they said he has a mood disorder. That didn't feel right to us so when I heard favorable reports about Kennedy Kreiger Institute, I made an appointment.
   It was very interesting to sit in on the evaluation and watch Joseph at work. His balance and muscle strength have greatly improved thanks to weekly OT. 
   Like most children who were exposed to alcohol in utero, Joseph detests rules. He feels they were designed to make his life miserable and perhaps if he fights against them long enough, they will go away. That mentality earned him a diagnosis of ODD, which we do not agree with. Joseph's inability to understand cause and effect make it impossible for him to understand rules. 
  He was also diagnosed with encephalopathy which, I have been told, may be better than the FASD diagnosis we went for as the medical world is more likely to recognize it.  
   He also has anxiety, which is very understandable considering the way his brain works. The doctor highly recommended anti anxiety medication as well as something for his ADHD. I need to find a knowledgeable, trustworthy psychiatrist who will help us know if medication is truly in Joseph's best interest. 

Waiting for the doctor to come in. Joseph thought I could lay down and sleep awhile. Leaving at 6:30 am made for a long day!

We stopped at Burger King for lunch and Joseph felt that was enough to make the long drive worthwhile!

Quilt Of Holes

Sometimes parenting children with special needs feels well, hopeless. Day after day finds you trying to meet their needs while you are empty and needy yourself. I think especially of those who have children with RAD. They face a hidden darkness and pain that threatens to pull them under. I pray this poem would encourage us all to continue with the mundane tasks of life.

                         Quilt Of Holes

As I faced my Maker at the Last Judgement, I knelt before the Lord with all the other souls.

Before each of us laid our lives like the squares of a quilt in many piles; an angel sat before each of us sewing our quilt patches together into a tapestry that is our life.

But as my angel took each piece of cloth off the pile, I noticed how ragged and empty each of my squares was. They were filled with giant hoes. Each square was labeled with a part of my life that had been difficult, the challenges and temptations I was faced with in every day life. I saw hardships which I had endured, which were the largest holes of all.

I glanced around me. No one else had such squares....other than a tiny hole here and there, the other tapestries were filled with rich color and the bright hues of worldly fortune. I gazed upon my own life and was disheartened.

My angel was sewing the ragged pieces of cloth together, threadbare and empty, like binding air.

Finally the time came when each life was to be displayed, held up to the light, the scrutiny of truth. The others rose; each in turn, holding up their tapestries, so full their lives had been...My angel looked upon me and nodded for me to rise.

My gaze dropped to the ground in shame. I hadn't had all the earthly fortunes. I had love in my life, and laughter. But there had also been trials of illness and wealth and false accusations that took me from my world as I knew it. I had to start over many times. I often struggled with temptation to quit, only to somehow muster the strength to pick up and begin again. I spent many nights on my knees in prayer asking for help and guidance in my life. I had often been held up to ridicule, which I endured painfully, each time lifting it up to the Father in hopes that I would not melt within my skin beneath the judgmental gaze of those who unfairly judged me.

And now, I had to face the truth. My life was what it was, and I had to accept it for what it was. 

I rose and slowly lifted the the combined squares of my life and lifted it to the light. An awe filled gasp filled the air. I gazed around at the others who stared at me with wide open eyes.

Then, I looked upon the tapestry before me. Light flooded the many holes, creating an image, the face of Christ. Then our Lord stood before me, with warmth and love in his eyes. He said, "Every time you gave over your life to Me, it became My life, My hardships and My struggles.


Each point of light in your life is when you stepped aside and let Me shine through, until there was more of Me than there was of you."

May all our quilts be threadbare and worn, allowing Christ to shine through!

New Treatment For Eczema

     One of the most frustrating parts of parenting a child with special needs is the paperwork. Scheduling appointments, making sure you have the right papers for the right doctor as well as a host of previous test results can give me a head ache. Someone wisely told me to buy a ring binder and keep all pertinent papers in plastic sleeves inside the binder. I am so glad I did. I have my phone numbers, immunization records, birth records, any and all evaluations, everything goes into that binder and I grab it whenever I take Joseph to an appointment. It will also provide a paper trail if the time were to come that we need one.
   The most frustrating part of all is dealing with insurance companies. I despise "arguing" with them over my child's treatment and whether or not we need a referral and if so, from who and when. Anyone want a job?
   On a brighter note, I had Joseph at the dermatologist in preparation for an upcoming evaluation. His eczema is being very stubborn and refusing to clear up and I wanted proof that we are under a doctors care. Am I paranoid? Perhaps, but anyway, the doctor told me that there is a new theory/treatment that dermatologists are recommending for eczema...bleach baths. They have discovered that children with eczema, who swim in pools over the summer often have healthier skin (or lack of eczema). He said this treatment works for about 75% of patients, so guess what we are going to be doing? I will let you know how it pans out.
   When the doctor left the room Joseph turned to me and said, "That man told us to try things before and nothing ever works, this probably won't either!" Poor boy.

The Emotional Impact Of Trauma Work In Parents Of Children From Hard Places

Compassion Fatigue: fatigue, emotional distress or apathy resulting from the constant demands of caring for others or from constant appeals from charities.

I found the following from an article on fatigue in the medical field: Most nurses enter the field of nursing with the intent to help others, and provide empathetic care for patients.... I think foster and adoptive parents begin taking in children with the same goal in mind, but like the nurses, if we aren't careful we too become victims of Compassion Fatigue.

Why? What are we doing wrong? Where does the break occur? What can be done to prevent this from happening? Social Services, adoption agencies and mental health groups are beginning to ask these questions, some more adamantly than others.

I am convinced better training would go a long way. Foster and adoptive parents need to understand connected parenting before bringing troubled children into their home. Even if the child is a newborn, parents need to understand attachment, how to build it and why it is so crucial, as well as what can happen if attachment does not occur. I know everyone wants to avoid labeling children who are in foster care as different but you must realize that these children have experienced trauma which is why they need to be parented differently. Parents need to understand that, sadly we didn't.

Don't take more than one child in to your home at a time for long term/adoptive placements. Siblings who have experienced trauma together can have what therapists call a Trauma Bond. The children bond through the pain they went through together. They keep recreating, triggering that pain in each other to keep that bond alive. Children who come into our homes through foster care can be exceptionally needy. For some children it is best to be an only child, when you get a sibling group, you have to spread yourself really thin and you may find it difficult to reach around.

To help a child work through their trauma, you must walk beside them mentally and emotionally as they process what has happened. When you have multiple children with PTSD and trauma, you will soon find yourself burning out. Put your child in respite, give yourself a break. Respite should be mandatory but take note that I am saying this in hindsight, I wouldn't have agreed with myself 5 years ago!

Social workers and caseworkers need to understand how mental health and trauma affect children and the families who are now parenting them. Parents need to be taken seriously when they have a need. I know the mental health system is clogged with traumatized and mentally ill children and it isn't always possible to find a bed for a child who needs help, but neither should foster/adoptive parents be left hanging in limbo with a child who is unstable.

Joining a support group for parents of children with similar needs is also beneficial. Just knowing you are not alone in the craziness can do a lot to eliminate caregiver fatigue. Emotional support is an absolute necessary.

Know your limits. When we went into foster care we saw hurting children and wanted to do everything we could to help them, never thinking of the toll it would take on our health. I know I say it time and again but, "Know your limit, you can do more harm than good by ignoring it."



*I am throwing out advice, but I must admit we didn't follow these guidelines. In hindsight, I know I wouldn't be so burned out if we would have done things differently but we didn't know better.

Relating To Our Children From Hard Places At Christmas

Christmas that wonderful time of year when stores are filled with toys, music and lights, there are family gatherings, class parties, gifts and food, plus blinking lights are glowing from houses as we drive by.

   Christmas, the time of year when meltdowns and tantrums intensify, when already hyper alert children are even more overstimulated than usual and sugar and special treats are handed out freely. The time of year when the typical child can easily become overwhelmed and children who find daily life a challenge are left reeling.

I know it sometimes looks like we are depriving our children when we say no to a treat you want to give them or when we remove the toy with lights and sounds and give them a book to read instead. If I may, I want to give you a little insight into why we parent our children differently than the typical child as well as explaining why we stick rigidly to our "rules."

Children with FASD and/or attachment disorders need 24/7 supervision. That level of supervision is not learned in one day, one week or even a year. We have been parenting children that need this level of supervision for a number of years and quite frankly, we have a long way to go. So, even though you may think you will keep an eye on my child, and I don't doubt you will do your best... we know how quickly he can get into trouble when your back is turned.

Our child isn't trying to be "naughty" he simply has no sense of cause and effect. Which may not sound like a big deal but our child doesn't understand that he will get burned if he touches the flame on a candle or that throwing heavy toys down the stairs could hurt someone. Our son is 8 but he needs to be watched and cared for like a 3 or 4 year old, something that is easy to forget.

Sugar. Our son and one daughter don't tolerate sugar very well, however another daughter calms down when when she has sugar and caffeine (in moderation). So if you want to give our child a treat ask first. Our children won't be embarrassed nor will they feel like they are being deprived when we say no to your request. Oh they might grumble and fuss but they know why we say have to say no sometimes. If you give my child a treat that I know will affect his mood, attitude or behavior and I have to take it, he will feel worse than if he never had it at all. Our son may ask you for food but please ask us before you give him anything because he does not know when he has had enough. Nor is he above asking you for more food when we have told him he has enough. 

Toys that make noise easily overstimulate our son. Please don't be offended if we turn down the toys you give him and choose something quiet instead.

If you want to spend sometime with our son such as reading him a story or playing a game, feel free to ask and please don't be offended if we say no. 

Our son does best when playing one on one. If he is playing with a friend and when your child joins in, we tell our son to play by our side, please don't think it is because of your child. See, our son has a hard time following social cues and trying to keep up with more than one friend makes his brain work overtime and he is soon into trouble or becomes upset.

We may appear overly strict about following rules and bedtimes. We would love to slack off over the holidays but our children do best when we keep them on a schedule. I am not talking about having a grumpy child the next day because he got to bed late the night before, but about the child who will struggle mentally and emotionally for a week or more.

Our children know we keep a close eye on them because we love them and want what is best for them. Nevertheless, because of their early childhood experiences, they know that there are parents do not always take care of their children, so they are quick to doubt our love. When the other adults in their lives are willing to abide by our decisions, it goes a long way in building trust. They are able to view adults as a united group who really care about them, instead of people to divide and conquer.

We would like nothing more than to have our children run and play with their little friends but first they need to learn boundaries both for their safety and for your child's safety. We are striving to teach our children that mom and dad meet their needs. While it may look like they no longer struggle in that area, the truth is, while they may not remember what happened when they were babies their bodies remember and the feelings of neglect and fear can be triggered by a seemingly harmless interaction and we need to continue practicing the safety measures we put in place until the child has healed from his trauma.

At The Cross Roads, When Is It Time To Change The Goal's When Parenting A Child With RAD?

A little over a year ago Dean and I went to TAP (The Attachment Place) to discuss B's future. We as parents take our children's future into our hands every day when we make decisions for their care and schooling, but this was different. 

   We knew the words that were said that day would make a huge difference in B's life, they could shift the scales towards healing or take away his only chance of healing.

   When do you say, enough? Is it morally right to hand over your child to another set of parents? What is our obligation to this child, especially since we promised to love and care for him....or could finding him a new family be considered loving him?

   We analyzed the situation from every angle, prayed over it, talked to doctors, psychiatrists, therapists and "experienced parents." 

   Here is what we came up with, in part:
-B did not trust us, because I took him for visits with his bio parents who had hurt him. In his childish mind, I wasn't protecting him. He was guarding his heart when he came to us and those visits proved what he knew all along, adults are not to be trusted.
-The other children were losing trust in us because we weren't keeping them safe from B.
- 4 years of therapy, 2 of those years were intense therapy hadn't been enough to break through his barriers.
- Children with FASD cannot understand cause and effect so he didn't have the ability to link his behavior with consequences and felt that the world was out to get him.
-Medication didn't help his anxiety. Children with FASD metabolize medication differently than you or I, which makes it very difficult to find something that works.
-Nurture helped as long as it wasn't Dean and I offering the nurture. Remember he didn't trust us.
-He knew he had wronged his siblings and even though they forgave him, they couldn't trust him and he wasn't emotionally healthy enough to work at regaining their trust. 

In the midst of it all was the fear that we had failed him. God knew how hard we tried, how many prayers ascended to the throne on B's behalf and how many gallons of tears we cried. In spite of it all, B hadn't healed, that meant we failed. Such a bitter word, FAILED! 

We knew that for B to heal he would have to be in a place where he was able to take in love and nurture. A place where he could make a fresh start........ But that meant letting go of our hopes and dreams..... it meant a future without us playing a major role in B's life, it meant we had failed.

   RAD is hard, tough, yucky, stressful and among the very worst of childhood mental disorders. We have very few good memories of B but he was ours and even though many days found me in tears and pain, we had hope that things would get better. Maybe a new therapy would be discovered, something that would reach the little boy locked inside...maybe B would open his heart just a bit and we could wiggle inside and help him heal....

That November day found us facing the bare facts, B didn't and most likely would never trust us. We had tried medication, therapy upon therapy, out of home treatment, taken him to more doctors and for more evaluations than I can count and we still couldn't bring him home.

 Now what? We had tried harder for years, was it time to look away and pass on the responsibility?

The weight of the decision we knew we had to make concerning of B's future, felt overwhelming. We felt inadequate to make the call that would forever change our lives as well as B's.

 We prayed that if it was God's plan for B to move on, that he would have someone step forward. We laid out our fleece before him, then stepped back to see what would happen, we stepped back while fear bit and snarled at our heels like a wild animal. What if no one came forward? What if....???

 Several weeks later, the call that changed our lives and B's future came...there was a family who met all of our specifications and more and they wanted to give B a home. This family was as perfect as humanly possible. God had provided. For so long we felt like Abraham, offering our "Issac," wondering how God would provide and when he did, we were awe struck. Like Dean said, "It makes you feel really small, when God comes through and gives you more than you even thought to ask for."

B has been with his new family for several weeks and now we are trying to piece our lives back together. Trying to find a new normal amidst the feelings of relief, guilt and grief. Like every other grieving person, we have days where we praise God for his goodness, days where the sun shines and our hearts rejoice. But then there are days where the sun is hidden behind black clouds of pain and we battle the inevitable emotions that flood over us. There is also all the trauma from the past years to work through. When we were too traumatized to process it, the pain got stuffed into corners and now it is coming out in force. I am continually amazed at the clarity of the memories. I literally feel like I am in the midst of the scene's I remember. My heart races, I break out in a cold sweat and panic sets in. My hope is that as time passes those scene's will fade and we can move on. 

But for now, we still cry and I write jumbled blog posts..... signs that we have a good deal of healing ahead of us! :)

15" Sensory Bead Sale!!

                               20% off sale                              
Order two or more beads from the color scheme's listed below and receive 20% off your order!

Sale runs from November 26- November 30

15" necklace - $15 plus shipping (sale does not include 10" size)

To order: email me @ sensorybeads@gmail.com

Order now and receive them in time for Christmas!

Blue/Green

Neutral

Multicolor

Purple

Coral

Sensory beads are designed for the child with oral sensory needs. Does your child chew on his clothing, pencils or fingers, try sensory beads! They are also great for teething babies.