FASD and toddler years

I bet you can tell how long the face paint lasted on the kids with sensory issues!

 My friend Carrie, asked the question "Can we talk about Toddlers and FASD?" Here is what I remember and am living now regarding FASD and the toddler/preschool years. I just knew that something was not right. And at the same time, I doubted myself at every turn. Kids are all wired differently, I told myself. I am expecting her to act like the other kids...it is all just normal, I tried to convince myself. The extreme hyperactivity, the defiance, the stubbornness and the limited ability I had to redirect the behaviors I was seeing. I saw my children who I knew were intelligent and could talk circles around some of their peers. But, the comprehension was lacking. I remember Hope standing in the middle of the street, refusing to move even when a car was coming right towards her. I screamed to here to get out of the street..and she stared at me, refusing to move. Later, she said to me..."What does street mean, Mommy?" It was then that I knew something was not right.
I cried in the office when I brought my first child to the FASD clinic. Just getting my four year old to the appointment was a struggle. She refused to go up the elevator. She refused to leave the waiting room. When we got into the office with Dr. Chang, she bounced off the walls and started throwing the little ear probes that were hanging on the wall. I knew then that all the wishful thinking and prayer was not going to make this brain damage go away. It was a relief to get the diagnosis at first. Finally, someone was affirming what I already knew. It wasn't just me as so many people had implied. And then my relief turned to sadness as I learned more and looked to the future. Somehow, I told myself that she was going to have a "mild" case of FASD. She was going to avoid much of what kids with FASD struggle with, I thought.
And as all of our kids do, she paved her own way through FASD. With medication to treat the ADHD, her oppositionality and extreme hyperactivity is controlled. If she misses her medication, I know it...the whole family knows it...like this morning at 5 am when she woke up. She has a personality of pure sunshine. She is positive, contemplative, encouraging to others and creative.
Her learning deficits have become very clear. They have changed little since her toddler years. Her executive functioning skills...her organizational skills, her ability to self assess, her ability to break down big projects into small steps are grossly impaired.  Math and handwriting are very difficult for her. Friendships are not...although her ability to see through those who do not have good intentions is. She loves everyone. She is extremely vulnerable.


So, it wasn't just me...overreacting to what I saw in the toddler years. It was real. It is real. It will always be real.  And now, 12 years later, as we sat in the FASD clinic again with our three year old daughter last week and heard the diagnosis of FAS, we begin again. Her symptoms are different. She does not have the extreme anxiety issues or rages like Kaden does. Although she is very, very busy, her attention span is more focused than her older sister's. As the doctor handed me a checklist with 12 different characteristics of FAS, all but one were marked as clinically significant for Maisy. She is very bright...I don't doubt that for a minute. But her test scores did not reflect that. Her IQ placed her in a category of cognitively disabled. My heart breaks. Maisy has difficulty with social relationships...she is overly friendly and has no fear of strangers. She will go to anyone. Of course, as with all of our kids with FASD, it is difficult to determine if there are other conditions that would account for some of the unusual behaviors. Maisy is very obsessive and requires routine. I would expect that she may have an OCD diagnosis at some point. She is obsessed with watching any ones upper arm skin flap..she has figured out ingenius ways to get perfect strangers to flap their arms so that she can watch their skin jiggle...she asks them to jump, to clap for her behind their head, or to dance. It looks cute at the time, until people figure out what she is doing...not so cute.  Just like with the others, I just knew something was not right...that could not be explained by simple personality differences or early experiences that she has been through. I can not imagine my life without this little bright light in the world. If I described Hope as sunshine, I would have to describe Maisy as an explosion of the sun!


Kaden presented with a very different set of issues. He is a very literal thinker. Phrases used in everyday conversation, would and still do cause him anxiety. And then there are the rages that were nothing like temper tantrums...they were more intense, longer and more frequent than anything I had experienced. And the difference also lay in the precipitating events that led up to them. He did not rage because he could not have candy or a toy, like some children. He raged because his train would not line up the way he thought it should. He raged because his clothes felt funny. He raged because he perceived we were mad at him. And now the rage has turned inward. He is in first grade, the the anxiety level of this child is difficult to watch. He has always been an anxious child, and he does have a diagnosis of anxiety disorder as well as ADHD and FASD. The anxiety in him is particularly difficult to watch..painful to watch because it is clear how troubled he feels. He gets little relief from the his own mind--the fear and worry.


And yet, when he is happy, he is amazingly happy. He has moments of joy that can fill a room with delight. He has a great imagination and can play for hours with trains, car and a doctor kit.  All five of our children with FASD have such incredibly tender hearts. They are kind and loving in ways that are not like other children. They face the struggles they have been given with courage. That was evident early on as well.


This is our experiences with FASD early on. I would be safe to say that if you are considering the possibility that your child may have FASD, there will be well meaning people in your life that will be quick to share that "their child did the same thing at that age." They will tell you not to worry and that they will out grow it. Just know that there are many of us out there who are here to walk alongside of you on this journey of FASD. We will promise to listen without judgment.  We will shed tears with you as you wrestle with the lifelong implications. And we will always strive to share with you hope for the future...because living with someone effected by FASD is not an easy life, but one so worth living...filled with many unexpected blessings along the way.