Friday, June 8, 2012

God Will Get Us Through the Challenging Days

I was asked to write this for AdNet  Anabaptist  with disabilities publication. I was sent this back in an email and thought this was what was going to be published but only some of my quotes were in the article so thought I would post it here. I updated some pictures.

We will be celebrating out third year adoption anniversary on June 10th a very special day!! We are taking the boys to the zoo their favorite place then to the doctors and out to eat.
God bless you all!!

"God Will Get Us Through the Challenging Days"

Our three boys on Mother's day

Three years ago, my husband and I adopted three boys with Fetal Alcohol Syndrome (FAS). Tyler is now eight, Stephen is six, and Christopher is four. FAS affects my children and our family in many different ways. My three boys are all so different, and sometimes it is  hard to believe they all suffer with the same affliction. All the boys are also oppositional, which is common in FAS. Tyler was four years old when he came to us. After four years, he still exhibits a lot of negative behaviors. He continues to lie, steal, and wets in his pants, on furniture, and the floor. Tyler also has Reactive Attachment Disorder (RAD) which often comes along with FAS. Although he appears "normal" at first glance, he is extremely emotionally challenged and requires constant supervision. He is highly intelligent and chooses to use his intelligence mostly in negative ways. We chose to home school this past year to focus on bonding and behavior.
Genetic testing of Stephen has revealed that six genes in his DNA are damaged, which is another consequence of FAS. This is permanent and will be passed on to any offspring. Because he was only two years old when he came to us, we have done bonding “rituals” with him with great success. A wonderful book on this is I Love You Rituals, by Becky Bailey. It is full of little games to promote healthy bonding activities. Stephen is a slow learner, yet he is doing much better in school than we ever expected. He is sensory seeking so he has a hard time not touching things or other kids. This has been a challenge especially at school. He also has a lot of problems with getting to sleep and staying asleep, which will likely be a life-long struggle for him.
Christopher came to us at five days old which has made a huge positive difference. He has one damaged gene and is also missing one gene totally. He has even more trouble sleeping than Stephen. He had an EEG which came back abnormal so they are running more tests to watch for seizure-like activity. He also has sleep apnea and often stops breathing in his sleep. He is extremely hyperactive.
Our family spends most of our evenings at home. It is difficult for our boys to be out of their normal routine. It would be nice to have breaks and to be able to get out and interact with adults once in awhile, but it is hard to find a babysitter who can watch all three of them together. We are part of an older congregation and it is difficult for them to support us outside of church. We have had some in church who would watch the boys once in awhile for us but they have found it hard to continue.
Our experiences in our church have been very positive overall. I honestly can not think of a better place to be with our boys. They are loved and accepted. I think being in a smaller church where the boys know everyone and everyone knows them has helped a lot. Some people do not understand why we draw such strong boundaries, especially with Tyler. That has been a challenge because they don't know what went on just before coming to church. I used to walk into church completely stressed out. I realized “I” had to let go before I walked inside the church building and not focus on the battle that ensued often moments before.
Can't believe it has been almost 5 years since they first came into our lives.

his first day riding without training wheels to some it might not seem like much to us it is one more hurdle he made it over.
Over the past three years our church has learned to accept that our children require a low sugar diet. Members have had to stop doing some things that comes so naturally. I appreciate that effort so much. Sometimes the boys will say things that are not true although in some cases it may seem true to them. This has hurt a few people's feelings. I pray they will understand that the boys, although they look "normal," have brain damage. Seldom do we fully understand the reasons why these boys say and do the things they do.
Most people in our church have been supportive and accept what my husband and I are trying to accomplish, although it is hard for them to understand the methods at times. We have tried the typical ways of child rearing with little success. The way we now deal with the boys is something the doctors and counselors have helped us find, yet it looks strange to the outsider.
Making a Peep cake lots of fun lots of sugar good thing we had a lot of helping eating it!!
My faith has remained strong and God has affirmed to us that He is with us always. We were told our youngest would most likely be severely mentally challenged. While he is behind in a few areas and is extremely hyperactive, he is very intelligent. We also have faith that God will get us through the challenging days and will be that light to our sons as He is for us.

One thing that would help is if people would stop thinking my sons are “normal” children. As much as they look like they have no disability, their brains function differently. Tyler's behaviors are often overwhelming. I wish they could just be like other kids, but they are not. My husband and I have to accept this and not expect too much out of them and yet try to motivate them to reach their potential at the same time. It's a fine line, and I am sure we get it wrong at times.
Suggestions I have for anyone who wants to be supportive is to educate themselves on FAS, RAD and Oppositional Defiant Disorder. To learn more about RAD, I recommend the book When Love Is Not Enough: A Guide to Parenting Children with RAD-Reactive Attachment Disorder, by Nancy Thomas. 
Some say we are being too hard on our children, or they disagree with the way we do things. We have to be consistent and firm but loving too. It would help if people asked for details instead of making judgments or just trusted that we do know what we are doing most of the time. I am okay with talking about it, but don't feel I should be sharing everything with everyone in church because that could harm my sons' self esteem.
If you have people with special needs in your church, don't judge them; instead take time to educate yourself and ask.
Sherry Martz surrounded by a bed of flowers

Sherry Martz attends Topeka Mennonite Church (Topeka, IN), where her husband Robert is pastor.

Saturday, March 31, 2012

Our first year with our sons who have FAS

My husband and I have been foster parents for over twenty years. We decided to open our home to children, said to have special needs. We began foster parenting with the intention of adoption this time, most likely  one or two older children.

I received a call one day from the organization we were working with, asking if we would take two young boys ages 2 and 4 who needed a more structured environment and a therapeutic home.

We didn't have much information about the two boys just that they had a lot of behavior problems. I only really spoke to one of the foster Mom's who told me some of the behavior problems mostly with our oldest.

We had two home visits with the boys. Tyler was very hyper and talkative he ran into the house demanding to know where "his" room was at. He knew his parents rights were going to be terminated and was under the impression we would be adopting him even though he didn't really know what that meant. He would hit me and then ask if he was being bad. I would tell him it isn't nice to hit.

Stephen was wild also but didn't speak he said only one word Momma anytime I would leave the room he would run after me yelling Momma! Momma! He was a sweet and very affectionate child. I rocked him to sleep but he wouldn't stay in bed no matter what I did so I finally ended up putting him in bed with my husband and I so we could get some sleep. The foster Mom told me she just put him in his bed and he went to sleep, he didn't do that in our home.

We were snowed in for two extra days,  Tyler was off his medication for for those extra days. I was hit, kicked and bitten by him both on and off his medication. Both of the boys were pretty wild and ran through the house rampantly. I had to be in the same room as they were the entire time. I was exhausted by the time they went back to the foster home they were living in. 

We didn't know at this time the boys had fetal alcohol syndrome. One of the few things we marked saying we would not be able to deal with in a child we adopted, having had a foster child years before who we later realized had FAS/FASD.

On the way to take the boys back to the foster home they were living in, Tyler was very loud and rude in the van. He kicked the back of my seat and was being mean to the other children. I finally told him if he was going to be rude I wouldn't talk to him. He screamed and threw fits, it seemed the closer we got to the foster home the worse he became he cussed a couple of times and we ignored him. We had been warned about the cussing before the visit but rarely heard any from him.

The two year old, Stephen, sat very quietly in his car seat not speaking at all. He seemed to be zoned out after having run so wild in our home. At two, this child was small for his age and looked about one, he acted more like a one year old also.

After the first visit, we honestly didn't know if we could do this. It was really hard and took a lot out of me to keep up with the two of them. We found out two of our other foster children were being moved out. I wanted very badly to do a second visit as I already felt an attachment to the boys. My husband reluctantly agreed only because two of our older foster children were to be moved in with a relative.

We did the second visit with much the same results right down to getting snowed in. By this time I had been told that Tyler was diagnosed with Attention deficit disorder. That was the only real information we had on him. Stephen supposedly had asthma and had to have breathing treatments. That wasn't hard to do it was the only time he would sit quietly. Once again zoned out. 
Tyler(4) and Stephen (2) during our second visit  Dec. 14, 2007

Once we decided for sure that we wanted the boys, we began to look at ways to make things easier on all of us. We still had two other foster children at the time. In addition another teenage girl moved in about a month before. We set up a room down stairs with toys in it, a child size table and chairs, a TV and my computer. We put a half door in it with a latch on the outside. I spent most of my day in this room with the boys for the first few months. Neither of the boys knew how to play with toys instead they threw them, jumped on them and broke them. They tore wall paper off my walls, pulled my carpet apart and couldn't be trusted out of our eye sight.

Dinner time was quiet a scene neither of them used a fork or spoon they picked the food up with their hands. Acting as though this was the first time they had ever eaten at a table. It didn't take long for them to catch on to using utensils.

Their behaviors became even worse when someone would come over to the house or when we would go out. We found that being strict on them starting out was the only thing that worked and it still does. Many people don't understand this but they have not seen what happens when we don't start out strict either.

We were told by their previous foster mom we would never be able to take them shopping, they would never be able to sit in church and we would never be able to take them out to eat in a restaurant. After about six months and after their baby brother came along my husband and I were hungry and the boys needed to be fed.

My husband suggested a pizza place and I cringed but decided to see what would happen. I had already taken the two shopping alone and didn't have any problems. Tyler stuck to me closely in the stores and I would place Stephen in the cart. We went into the restaurant for the first time their eyes wide and I could see the excitement in Tyler's eyes. We sat down and my husband went and got all of our food since it was a buffet. The boys did great not one problem out of either of them, they ate nicely and didn't try to get up and run around. The baby cried as babies do, it was a nice lunch.

Our boys came with very little, clothing that was worn out and most of it didn't fit either of them. We went shopping and bought them new clothes and new toys, we were also given some toys and good clothes for them from people in our church. The boys were overwhelmed when we went to the store and bought them new toys. Tyler told us they had only ever gone to Goodwill to get toys and clothes in the foster home.

I had to sit on the floor with the boys and show them how to play with the toys even still once I wasn't on the floor with Tyler he would just sit. He had no imagination and he didn't know how to play. He would watch TV and I let them eat their breakfast in the play room at the table and chair while watching TV.
 We had to keep our knifes out of their eye sight for some reason knifes upset them, mostly Tyler. The foster Mom had warned me about his obsession with knives. On our visit it was close to Christmas I asked Tyler what he wanted and he told me a knife! I tried not to show any emotion and just asked him simply why a knife. His reply was so "I can kill myself."

We put the boys on a low sugar diet immediately. We tried positive rewards with them, I put up a piece of paper with each child's name on it and bought stickers when they were good that day, they got a sicker to place on their page. I bought some toys at the dollar store and put them into a large bag the boys even helped pick out some of the toys. They were told when the papers were full of stickers then they got to pick one of the toys inside the bag to have. This and time out worked pretty well for several months.

Their case worker came to see them after a couple of weeks, she couldn't believe the difference in them. We didn't know how bad their behaviors, mainly Tyler's, had been before they lived with us. We found out it had been much much worse than we had been told. The oldest had been known for leaving bruises on anyone who went to visit him. He had poured coffee and water on people cussed at them, left a dent in one of the ladies cars. We had not seen these behaviors in him except for a few hits and some kicking when he was told no and threw a fit. Tyler's counselor couldn't believe the difference in him either, in only a couple of weeks, he was calmer and said please and thank you to her. Everyone who had known them from the past said they were different children and wanted to know what we had done. We we were pro-active in their lives and gave them healthy boundaries. When someone came to the house we kept our boundaries they soon learned we didn't and still don't change our rules no matter who is around. In fact at home with no one else around we are still able to be much more flexible with them and have a lot of fun.

We also found out Tyler's diagnoses were not only Attention deficit hyperactive disorder but also oppositional defiant disorder, anxiety disorder, Reactive attachment disorder and Post traumatic stress disorder. I read on line, ordered books and learned as much as I could about each of these.

Robert and I were on our way to
Wal-mart, nineteen days after Tyler and Stephen came to live with us, we now had five foster children living with us! We were talking about how this was more than we had wanted but that two of them would be moving still but we were done taking in anymore foster children.

Thirty minutes later I got another phone call, our boys birth mother had given birth to another boy and they wanted to know if we would take him. I told our case worker I would have to call her back after I spoke to my husband. I wasn't even sure how I felt about it at this point but I found him and told him about the baby and he immediately and unexpectedly said well we need to keep the boys together. I responded with so what are you saying? He said "Yes, now what do you think about this bike?" I called the case worker back she thought they had already taken the baby and we began shopping for a new baby. Trying to remember what all a new baby would need was difficult.

The birth mother had a visit with the other three boys and while the boys were in the visit with the birth Mom we were given the baby as a foster child. The goal is always reunification and even though the parental rights would soon be terminated the birth Mom signed off on the other three boys at the hearing. My husband and I now had three out of four of the brothers in foster care. 

Our first night with Christopher (Peanut) 5lbs 13oz
Feb 20, 2008

The baby came with his own set of challenges. He had stomach problems and would cry a lot. He didn't like to be cradled like most babies do. He wanted to be laid down when he was sleepy and not rocked to sleep. He would also scream anytime he had to have his clothes changed as though he was in horrible pain. His little bottom had two open sores on it. I took him to our doctor the next morning and called the social worker at midnight when I saw them on him.  We know now the birth mom was not only binge drinking while pregnant but was also on Meth so our baby was in withdrawal and still today has sensory issues.

The first night at five days he didn't sleep at all, so I neither did I. We put a bed in our room for him and by two months he did start sleeping through most of the night. He would also roll onto his stomach and would scoot from one end of the bed to the other. Not really a normal thing for a baby so young to do. We tried to keep him on his back but the only two ways he wanted to sleep was in his car seat or on his stomach. Through out the night I would move him from one place to the other and try to put him on his back again but he was very unhappy with that so we would go back to the car seat. I bought him a nice bouncy seat and he would sleep in that for a short time but still wanted to be in the car seat. During the day he slept better in his own bed but he wanted to be carried anytime he was awake not rocked and cradled but carried he wanted to be moving. My husband would stay up after I went to bed at night and he would lay on his chest and sleep while my husband watched TV. Then when he was ready to sleep it was my turn to take him. He had trouble eating right from the beginning too. It would take me over three hours to get 2 ounces in him so by the time he was almost finished with one bottle it was time for the next one. He ate very slowly and would fall asleep while I was trying to feed him. I would rub his cheeks to try to get him to eat more.

Our first Easter with the boys
Christopher 2mo.(above)
Tyler and Stephen  (below)

Our first year with our boys was one of amazement as they grew to be their own little persons and the wonderful changes they went through. There were also just as many challenges things we had never had to deal with before.
Tyler still comes up with new things for us just to make sure we are still paying attention and up for a new challenge.


Christopher, climbing before he could crawl

We have dealt with things like Tyler peeing all over his bed and his bedroom floor and twice he smeared his poop all over his room and furniture. We tried putting him in preschool but had to take him back out because the behaviors got so bad. Tyler came with a lot of baggage and  most of it was not good. Not only does he have FAS/FASD but he also has reactive attachment disorder, ODD oppositional defiant disorder, conduct disorder, PTSD Post Traumatic Stress Disorder, an anxiety disorder and a mood disorder which we now see as bi-polar disorder and ADHD
Tyler and Stephen (Tigger) Spring 2008

Stephen came with his own set of issues, though when they were placed with us he didn't have any kind of a diagnoses yet.

They were all diagnosed with
fetal alcohol syndrome, after being here for nine months. All three of our boys had all the physical requirements to be diagnosed with FAS and some they didn't have to have. They had a lot genetic testing done at that time also but we never got any results we assumed there wasn't anything unusual with them.

Stephen (Tigger/Tig) summer 2008

We have very clear rules in our home and we stick with them. Children with fetal alcohol syndrome have to have very strong clear boundaries. They only see things in back and white so if you say "no" to something it needs to stay no. When you allow them to play with something you can't change it from day to day. It does take some thinking ahead which is hard to do when they have already been living with you for several months. We also ask them if they understand what we are saying to them and most of the time I have them explain what they need to do back to me so I know that they really do understand. Often times they didn't understand at all.

Tyler had a huge vocabulary but he didn't understand the words he was using. The boys love to help out around the house. One day when Tyler had been acting up I told him he would have to help me with my work because I wasn't able to get it done since he was taking up all of my time by acting up. He was having a down day, but when he was wiping out the bathtub he had a smile on his face. When he helped me put the laundry into the washing machine he was happy. It wasn't a negative consequence like I had thought.

Helping has actually built up his self esteem so now I try to find things they can do. I am normally a very picky person and things have to be done a certain way. I have let go of most of that, the boys help fold their clothes and I help match them up. They pick out what they want to wear each day unless we are going to church.

We decorated the boys bedroom before we knew it would over stimulate them. Tyler has been moved to his own room since it wasn't working well with them sharing a room.
His room is very plain and simple because he is not able to function with too much in it. He has a plain tan curtain and a plain tan cover on his bed. I took most of the decorations out of the other bedroom and that has helped. I also have light dampening curtains on their windows which have helped greatly at nap time. I hope that we will be able to slowly move somethings in that the boys want.

Tyler would like to have a Spider Man bedroom but tore up his table and chairs that was in his room which had Spider Man on it.They pulled the new wall paper off the wall in their room and the old wall paper too. Stephen climbed up and got the things down off the shelves so all of those had to be taken out also.

We do things to help the boys with bonding like all of us dressed in overalls and went to church. We also had our fall pictures taken in them. At Christmas we all wore red shirts even their older sister had one on. This helps them see us as a whole unit, a real family. It has been harder on Tyler who fears being moved out of our home. He knows we are adopting him but he has been moved several times in the past. I went to my daughters while she was in the hospital and had to stay over night Tyler was very upset that I was gone. He had nightmares that his birth mother broke into our home and took him away.

We have a bedtime routine, the boys have a snack if they have been good that day. I read them a story and then my husband rocks each one while I sit with the other one. I rock them at different times and we both make sure we hold them during the day. Also lots of hugs and kisses are exchanged.
They are very loving children. We have to do intentional bonding and feel that Stephen has already bonded to us as his parents. He happily tells everyone, “we are a family” with a big smile on his face. Tyler who loves us is still struggling with his fear of being moved or taken from us, so he holds back a bit which is a normal thing for him to do.

Every night we each say one good thing about everyone else at the dinner table this helps us to build their self esteem and helps with the bonding at the same time. The boys love doing this and when we get to the baby we all clap for him. On Friday nights we just started having family night where we play a game or watch a children’s movie and have popcorn with the boys.

Stephen is three now, he is potty trained and he even stays dry most nights. He talks in sentences now using three to four words. We tried to get him into speech therapy but were told  wrongly, the funding has been cut and they didn't have any room for him. My husband and I work with him everyday on his speech. It is seldom that he isn't talking now. A few weeks ago he came into the kitchen and asked me to bake a cake with him. I asked him, "why should I bake a cake with you?" He relied, "because I used my words." I couldn't argue with that so we baked a word cake that evening. He is still not at his age level because he never will be.  have worked for over a year to teach him colors we have done red day and just when I think he has it, he doesn't so then we did red week. It took over a year for him to finally get his colors and then one day he just had them he still made some mistakes but for the most part he had them. This is very common with children who have FAS. He is learning his letters and knows the alphabet song. He can write a couple of the letters in his name. He is able to count up to 14 for some reason he tends to forget the number 5. He  is a very happy and loving little boy, he is full of life and energy and make us smile a lot.

Tyler is doing much better, he still has rages but they are fewer, less intense and farther in between. He still pees his pants when he is angry and we are still working on this issue. He does not have any physical problems that cause this. He has not pooped in his pants in months. He has learned how to write his first name and is learning his last name. He knows his address and I am teaching him our home phone number. He can write most of his letters and is learning the sounds. We don't know if he will be ready for school next year emotionally, we are waiting before we make that decision but he will be reading soon. He has his cycles of being very down and then he has cycles of being very hyperactive. Both have their down sides and both has positives. It hurts me to see him when he feels so down but he is also more sneaky about doing things
during those times and has to be watched more

Our first Christmas with our boys, Tyler, Stephen and Christopher

Christopher, the baby just turned one, he is walking and he is into everything. We have never had to child proof our home the way we have had to with him.

He likes to climb and he likes tight spaces. He has a temper when he wants something but we hope he will learn like the other two are, that the tantrums don't work. He gives us hugs and kisses now, but it took some work to get him to that point. He is very bonded to both myself and my husband. He doesn't just go to anyone the way the two older boys did at first. We were told that at best because of the amount the birth Mom had drank during this pregnancy he would be mentally retarded however Christopher is above average and if he can't get somewhere he drags toys over and climbs them to get what he wants. He can open most baby gates so we had to buy the metal ones. He is very active and strong but most of all he is very happy and spoiled. He sleeps with my husband and I and is very comfortable there.
Christopher's 1st birthday
with his favorite toy.

The biological parental rights were terminated on the father, the birth Mom signed off on her rights. A few months later they filed to terminate their rights for Peanut/Christopher our youngest. Both were incarcerated at that time and upon being served in court with the papers they both signed him over. That was a huge weight off of my shoulders to say the least. It was one among many days with our boys I will never forget, what a wonderful surprise!
Robert and I with our boys in Oct. 2008

These are a few of the things we have dealt with during the first year with our boys. Along with all the negative things there have also been so many positive things. These three boys have been such blessings to my husband and to myself. We will continue to learn as much and we can and we are also trying to educate teen girls about the effects of alcohol. We are both very committed to helping these boys have the best life possible. I know we will make mistakes but we pray our love for them will over come the those things. At the end of our first year we had a "We Are A Family" party this was because we were not able to adopt them as quickly as we would have liked and to help mainly Tyler know that we would be his family forever.

We also take the boys shopping, out to eat and Tyler and the baby are in church every Sunday with me.
The cake from our 1st year anniversary party with our boys
Not the end, This is only the beginning...

Friday, March 23, 2012

Fetal alcohol syndrome

What is fetal alcohol syndrome and fetal alcohol spectrum disorder?

Fetal alcohol syndrome (FAS) is a pattern of mental and physical defects that can develop in a fetus in association with high levels of alcohol consumption during pregnancy. Current research also implicates other lifestyle choices made by the prospective mother.
  The current recommendation of both the Surgeon General of the United States and the British Department of Health is to drink no alcohol at all during pregnancy.
Alcohol crosses the placental barrier and can stunt fetal growth or weight, create distinctive facial stigmata, damage neurons and brain structures, which can result in psychological or behavioral problems, and cause other physical damage. Surveys found that in the United States, 10–15% of pregnant women report having recently drunk alcohol, and up to 30% drink alcohol at some point during pregnancy.
The main effect of FAS is permanent!!!! Central nervous system damage, especially to the brain. Developing brain cells and structures can be malformed or have development interrupted by prenatal alcohol exposure; this can create an array of primary cognitive and functional disabilities (including poor memory, attention deficits, impulsive behavior, and poor cause-effect reasoning) as well as secondary disabilities (for example, predispositions to mental health problems and drug addiction). Alcohol exposure presents a risk of fetal brain damage at any point during a pregnancy, since brain development is ongoing throughout pregnancy.
Fetal alcohol exposure is the leading known cause of mental retardation in the Western world. In the United States and Europe, the FAS prevalence rate is estimated to be between 0.2-1.5 in every 1000 live births.

FAS should not be confused with
Fetal Alcohol Spectrum Disorders (FASD), a condition which describes a continuum of permanent birth defects caused by maternal consumption of alcohol during pregnancy, which includes FAS, as well as other disorders, and which affects about 1% of live births in the US.The lifetime medical and social costs of FAS are estimated to be as high as US$800,000 per child born with the disorder.


Signs of fetal alcohol syndrome may include:

Deformities of joints, limbs and fingers
Poor coordination
Mental retardation and delayed development
Abnormal behavior, such as a short attention span, hyperactivity, poor impulse control, extreme nervousness and anxiety
Slow physical growth before and after birth
 Heart defects
Learning disorders
Small head circumference and brain size
Vision difficulties or hearing problems
Distinctive facial features:
my little one he is looking up so it is hard to see how small his eye opening ate. He also has the thin smooth area between his nose and upper lip which is thin.

I do not claim to be an expert on FAS I adopted the boys with FAS almost three years ago they were with us for two years before that. My experiences are my own and I don't have any great cures because they aren't any. I do however have faith and hope that my boys will be able to lead a somewhat "normal" life. It might not be what some consider normal but with God's help we are committed to helping them reach as far as they can go..

My other blogs on FAS and special needs children;postID=4931608200419700633;postID=7409022508128041194;postID=4823017805242446273