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