I'm not even sure where to begin with this post, but know I must share my heart and the road that God placed in front of us that we will continue to walk it even through the daily struggles. This post is about our wonderfully made child, Nick. First let me tell you that we believe Nick is a true gift from God and God has a plan for him that will blow us all away. That being said, my heart breaks that Nick has been struggling and living with a silent disorder that over takes his thinking and many parts of who he is without anyone even realizing it. My mother and I suspected it for awhile, but it was never confirmed. Well, this summer, I was determined to figure out why my child acted like he did with medicine and without medicine.
I was added to a support group of parents whose children were diagnosed with this disorder and I remember sitting down reading their posts about their children. "My child seems to search out batteries and becomes obsessed with taking them in and out of things." Paper seems to be an obsession, whether it's shredding, stacking, or drawing on every piece. Meltdowns over discipline, consequences, and small tasks seem to be a common theme, as well. Obsessions about events or objects that can literally drive anyone insane, the morning meltdown about getting dressed, not being able to follow even a one step direction, and the list went on. I sat there in near tears of both relief and sadness as they described my child. What is this disorder that is robbing our children of carrying on a "normal" life? Fetal Alcohol Spectrum Disorder. Yes, my child was exposed to alcohol in his mother's womb. Although, birth mom was in denial, the symptoms speak for themselves. His birthmom was a known alcoholic and the only confirmation was her word that she didn't drink. Live a day in my shoes with my kid and you will gladly agree with me! Let me share my research through these links:
http://pediatrics.aappublications.org/content/106/2/358.full
http://www.cdc.gov/ncbddd/fasd/documents/fas_guidelines_accessible.pdf
http://www.samhas.gov
That's a lot of reading..!! I do know this, so let me shorten it for you! FASD effects may include physical, mental, behavioral, and/or learning disabilities. My child has a disability in each of these characterizing areas! Let me share how this has affected my child!
Physical Effects on Nick:
1. Cleft lip and Palate with chronic ear infections
2. Cataract in his eye
3. Growth hormone deficiency
Cognitive Effects on Nick:
1. ADHD
2. Learning Disability (specifically in math)
3. Difficulty with planning and organizing
4. Information processing deficits
5. Working memory disorder
Behavioral Effects on Nick:
1. Transitions can be difficult
2. Defiance to instructions
3. Meltdowns
Social Effects on Nick:
1. Failure to consider the consequence for his actions at times
2. Lack of reciprocal friendships
3. Periods of high anxiety
4. Unaware of some social cues
5. His social/emotional age is half his chronological age, meaning his friendships are easier with kids half his age.
That is a lot going on for one kiddo to gather together and still try to "fit in" with his peers. Nick tries so very hard to please his peers and teachers that he holds it together all day for them and then gets in the car and either decompresses through drawing, crying, or extreme behaviors of defiance, wildness, or chattering. I truly don't know what I will get in the afternoon. I would like to open a window to you into our home in the mornings before his medicine has reached his system.
Typical morning routine has always been the same in our home. He wakes up between 7:00 and 7:15 in the morning. We normally have to pull Nick out of his bed, regardless of going to bed at a decent time. He slowly makes it to the breakfast table, sits down and tries to figure breakfast. We have trained him over the summer to make his own breakfast in the morning to encourage responsibility and he is getting it by himself, but every morning he still asks, "what's for breakfast?" He has to have a yogurt with his breakfast or we have an extreme meltdown or "fit." It takes Nick nearly 30 minutes to finish his breakfast, because he becomes distracted by the fridge, toaster, or whatever was in the kitchen that morning. We give him his medicine and then it's off to take a shower. His responsibility is to grab his towel from the back of his door and go get in the shower. It took us over two years to establish the habit of getting his towel before getting into the shower instead of walking through house, soaked, to go get it afterwards. The shower, then, takes him over 20minutes, because he can't seem to remember what he is suppose to do when he gets in there. My husband or I have to walk him through, washing his hair and washing his body, everyday! After the shower, getting dressed is whole other ball game! Let me remind you, Nick wears a uniform, everyday and it's placed in the same place every morning for him to put it on. This is our same conversation in the morning. "Nick go get dressed." "mom, where are my clothes, what do I wear?" "They are on the end of your bed." " I don't see them." " Well, if you would stop playing, then you could see them." "Oh, I see them." "Nick, you have 7 minutes to get your clothes on. Timer set." Timer goes off. "Nick are you dressed?" "Oh, I'm getting dressed." "Why are you not dressed?" "What am I suppose to wear? Where are my clothes?" I finally stop what I"m doing and stand there and talk him through getting dressed. In the meantime, I'm trying to get Elijah dressed and ready for the day. Once he is dressed, he is to sit at the dining room table, pull out his schoolwork and wait for me to get him started. I talk him through his first assignment, ask for questions, and then tend to Elijah. Nick finds a pencil, pen, piece of paper, or something to play with. I try my best to keep it together at this point and wait for medication to kick in. Once it finally kicks in, he sits and gets work done, but with mild distractions from his brother. By the time he is dropped off at school, I'm exhausted, but I must go on.... This is a daily struggle for our family and will continue to be, because FASD does not go away. We love our Nick so much and want what's best for him, but he is exhausting at times. I believe that some parents think we are far too strict on Nick or think he shouldn't be acting like that in a store, but please step in the shoes of this parent and try to hold yourself and your child together in all situations while his brain is chemically altered due to the affects that his birth mother's drinking had on him.
I will continue to fill you in on Nick and the life that God's laid before him and our family. Some may seem outrageous while others seem typical, but I feel it's important that others understand where my child comes from to understand my child. I know that some of Nick's teachers have started reading this blog, so I hope peeking in the lives of our family will give you some insight on Nick. Thank you for taking your time to see into Nick's life outside of school and we are so truly grateful for each of your investments into his life!
