Oct 26, 2011

FASD

Hi My Name is Ann Michelle

I am the mother of two boys, Jeremy (12) and Kennan (7), both joined our family through adoption. Like pretty much everyone on your site I didn’t start my parenting journey thinking I would parent a special needs child. In fact we didn’t really understand what might be long term for my second son until a year ago. It has been a long journey to this point.



FASD

What is FASD?

Fetal Alcohol Spectrum Disorders
FASD: is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications.

FASD includes conditions such as:
¨ Fetal alcohol syndrome (FAS)
¨ Partial fetal alcohol syndrome (PFAS)
¨ Alcohol-related neurodevelopmental disorder (ARND)
¨ Alcohol-related birth defects (ARBD)
Fetal alcohol effects (FAE) * obsolete terminology.

What Are the effects of FASD?


The effects of FASD vary among affected individuals.
Outcomes associated with FASD can include:
¨ Specific facial characteristics
¨ Growth deficits
¨ Mental Retardation
¨ Heart, lung, and kidney defects
¨ Hyperactivity & behavior problems
¨ Attention & memory problems
¨ Poor coordination or motor skill delays
¨ Difficulty with judgment and reasoning
¨ Learning disabilities

“Of all the substances of abuse (including cocaine,
heroin and marijuana), alcohol produces by far the
most serious neurobehavioral effects in the fetus.”
Institute of Medicine, 1996.

Us

My husband, Delmer and I have been married 17yrs. We learned two years after our marriage and two miscarriages later that we had less than a 10% chance of having biological children. We decided with the Lord’s help that adoption was the way we would build our family and thus began our journey.

Our Family

Five years into our marriages we adopted Jeremy and four and a half years after that we adopted Kennan.

Our Story

When Kennan was first born he seem healthy and “normal”. There was nothing that noticeably indicated that there were larger issues that would rear their ugly heads in the future. Things that we noticed where not life or death and could be attributed to normal. He was born with a heart murmur and a herniated belly button. Both healed on their own. He was fussy and seemed much like a colicky baby. He did better with soy based formula and we assumed he just couldn’t yet tolerate the milk proteins in regular formula. He was hard to comfort, would arch his back when you tried to snuggle and he didn’t always like to cuddle. But, there are some kids who just aren’t as snuggly as others. As he grew into a toddler he became stubborn, uncooperative, and unwilling to entertain the word “no” if he was being restricted from doing something he wanted to do. People kept telling me this was normal “terrible twos” behavior. But it was different than anything I had experienced. My gut instinct told something was “off” and “just not quite right” but I bowed to those with more experience and hoped they were right about him out growing all the little things that we were seeing. Then came his preschool years. He was have trouble with language acquisition and speech problems. People would tell me he was hard to understand – even I had a hard time always interpreting what he was trying to say and I am a full time stay at home mom. When we finally were able to get him evaluated by a speech pathologist she couldn’t find anything wrong. But the problems persisted and he was evaluated again in Kindergarten with the same result. His behaviors had also slowly begun to escalate and he was getting more noncompliant regardless of what we tried. We ask about things like ADHD and ODD – but where told that most doctors will not evaluate for either of these until around six because many kids do grow out of these behaviors. Again I didn’t listen to my gut instinct (I’m a slow learner) and bowed to those with more “experience”. Kindergarten was difficult but he seemed to manage with help. Kennan had a hard time learning the Alphabet and an even harder time putting sounds with letters. However, he could “read” a number of sight words. Money and time were difficult (although this can be common in many kids). He had a hard time consistently remembering his basic shapes – but had his basic colors memorized. Days of the week meant nothing to him and forget months of the year. He couldn’t even tell you his birthdate. His teacher and we were seriously talking about repeating Kindergarten. But with lots of help he pulled it together and rallied to meet the benchmarks necessary to advance to First Grade. His behaviors also increased. He was becoming angry and aggressive when frustrated and would hit, pinch, kick, and bite family members when he didn’t get his own way. He would also attack his brother without provocation. By first grade things had escalated even more. Both my husband and I had noticed that he didn’t always seem to “get it” or learn from consequences – both natural and disciplinary. School was becoming more of a battle he was having trouble staying on task and completing work. Homework was nearly impossible because he would through terrible temper tantrums when ask to do it. We were now beginning to understand that we had bigger issues than what he would just grow out of. In September of 2010 I came across an interview on ABC News about a couple who were parenting a child with FAS. As I listened to this mother describe some of the things they were dealing with, with this child it dawned on me that what she was describing sounded just like many things we had seen in Kennan. I “Googled” FAS/FASD and what I began reading that day left me a bit numb and shocked. It was like the authors of these sites had been living with us for the past six years. They were describing my child. But, I felt a little confused too. The paper work that Kennan’s birthmother had filled out for us stated that she had not participated in drugs or alcohol while she was pregnant with him. However, I had a vague unsettling flashback to a brief piece of conversation I had with Kennan’s birthmother a few hours after Kennan was born. But six years had passed and I just couldn’t be sure if what I was remembering was accurate since the conversation was just in passing and had happened so long ago. I called my husband at work and ask if he remembered if Kennan’s birthmother had ever mentioned drinking while she was pregnant. He said he wasn’t sure it was too long ago. I ask him if he had time that day to look up FAS/FASD and tell me what he thought. When he walked in the door that evening the first thing out of his mouth was, “that’s Kennan isn’t it?” All I could do was nod. We knew that we needed to have Kennan evaluated, but where to start?

We took Kennan to our primary care pediatrician. She diagnosed him with ADHD – it would be the first of a growing list of disorders. This time however , I listened to my gut instinct. I knew from my reading that many alcohol exposed children are misdiagnosed with ADHD. So we kept pushing, slowly at first, and later more forcibly. We agreed to try him on Ritalin for three weeks. It made the aggressive, argumentative, and out of control behaviors worse – but only as the medicine was leaving his system. But it did nothing for the of task or lack of concentration behaviors. We then tried him on Adderall. This was worse than the Ritalin. He was explosive. During this time I had called our caseworker (at the time of Kennan’s adoption) and ask if he would please do some digging to see if we could find any documented proof that Kennan’s birthmother drank while she was pregnant. He agreed to see what he could find. About a week later he called us back and confirmed what we already suspected. Indeed Kennan’s birthmother had drank during pregnancy and she had also used cocaine. But, for Kennan the alcohol was the bigger issue. We do not have an amount, how often, or when during pregnancy she drank – just that she did. We were now into December and things came to ahead. When Kennan got out of school on the last day before Christmas break he went into a massive meltdown. It was on again, off again, meltdown for the next six hours. At nine o’clock that night I had him physically pinned to the floor in our living room to keep him from being able to physically attack me in any form. He was crying and I was crying. When I finally got him calmed down enough for us to sit on the sofa he turned to me and with tears running down his face he said to me, “Mommy, mommy, I don’t want to be this way.” It was like he had pierced my heart with a dagger. I cradled him and cried telling him how sorry I was that things were so difficult for him and promised him we were doing whatever we could. The next day we met with the pediatrician. We went armed with the evidence of alcohol exposure and some “mama bear” attitude. We took him off all the ADHD medicine and demand to be sent for an evaluation with specialist who could dig a little deeper.

In May of 2011 he was seen by those specialists. I wish I could say that we had all the answer when we left that day. Far from it!!! There is no “magic” blood test to determine if a child has an FASD and Doctors don’t like to give that diagnosis. When we finally got the medical report this summer Kennan added several more disorders to the ADHD. He is now listed as having ODD (Oppositional Defiant Disorder), SPD/SID (Sensory Processing/Integration Disorder), DBD (Disruptive Behavior Disorder) and an unspecified Learning Disorder with the possibility of an FASD (Fetal Alcohol Spectrum Disorder – more specific ARND (Alcohol Related Neurodevelopmental Disorder)). And if the Psychologist that we saw this last summer ( a whole other story) had his way we would add CD (Conduct Disorder) to that list. My son’s diagnoses are starting to resemble alphabet soup. So this Wednesday (Oct. 5, 2011) we are off to see the Geneticist for further evaluation.

Meanwhile my son sees an OT once a week for his sensory issues, we struggle with getting him to school and getting school work done (he doesn’t qualify for any services at school at this point because he isn’t two years behind – massive frustration) and we have just received approval to start our fundraising for his service dog (specially trained to meet his needs). And despite all the above disorders there are many people who still think he doesn’t have any special needs. You see when Kennan walks into a roomful of other second graders he appears (and often acts) like any other kid his age. He has learned to “keep it together” at school for fear of what other kids will say. Because many kids with FASD are like Kennan FASD has become known as the invisible disorder. They want him to,”just buck up, work harder, quit goofing around, stop being lazy, pay attention, stop the behavior, and just get the job done,” never trying to understand that maybe just maybe he can’t – he has brain damage and it’s permanent – that doesn’t mean he can’t be successful – but it does mean he might have to do it a little bit differently than many other children.

3 comments:

Giuli said...

The struggle with your son is very frustrating. Just remember that your prayers will be answered and he will get the help that he needs. I am also in the same boat in that people don't realize that my son has special needs right off the bat. I can't tell you how many times I've been given dirty looks because I can't "keep my son in line" in public. No one knows your son better than you and your husband. You are doing the best that you can and he knows that you love him.

Sue Lee said...

Thank you so much for your post. I've been following a few blogs with similar stories as yours. I hope they can also be an encouragement to you!

http://blessedby10.blogspot.com/

http://urbanservant.blogspot.com/

Anonymous said...

Ann Michelle,

I just found your post (and this blog) today. (3/24/12). I have been on the FASD journey for 9 years. If you would like to email me, I'd be happy to share some things I've learned along the way. I am a paraprofessional in a public school, and my son has had an IEP since he transitioned from Birth to Three. I'd be happy to share some info with you to make sure that Kennan is getting all the services he deserves and has a right to. You can contact me at kmpellatt@tds.net.
Blessings!

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