An open letter to my family and friends during the holiday time.

The holidays are the hardest time of year for M. and therefore we need a little bit of help.

Most of you know that M was diagnosed with Fetal Alcohol Spectrum Disorder (FASD) and Sensory Processing Disorder (SPD). For those of you who haven’t done your research, FASD is a lifelong disability and his brain damage is permanent. He will not grow out of it. I am hoping to educate you so that you all can help us keep him as comfortable as possible. The energy and excitement of the holidays is extremely overstimulating for him. M thrives with a consistent schedule, a good night’s sleep, and managed expectations. All of these things get thrown out the window around the holidays.

The easiest solution for us would be to hide away at home with him and to pretend the holidays don’t exist. However, we love to celebrate and he will need to learn about the different rhythm of the holidays in order to manage when he is older.  I thank you in advance for the invitation to celebrate with you but it is very difficult for me to help M be successful all by myself.

One of the hardest things about raising a child with FASD is that it is an invisible disability. He looks and speaks like a typical 3 1/2 year old, but his maturity level and adaptive functioning is that of a child half his age. I ask that you remember this when we are visiting your home.

Any and all transitions are especially difficult.  At home we keep a consistent schedule, with transitions that he knows and practices. He most likely will not sit down to a meal with everyone else. Please don’t expect him to. He may not want to participate in any group activities, for example, opening presents. This does not mean that he doesn’t appreciate your gifts. He just cannot handle the sensory overload that happens during this time.

Please don’t expect him to eat.  He won’t eat new food in general and definitely not when he’s been smelling unfamiliar food cooking for the time period before dinner is served. Don’t be offended when I let him eat potato chips instead of your lovingly prepared meal. Eating crunchy and salty things is a part of his sensory needs. I promise you he doesn’t eat only chips at home. Trying to talk him into eating just makes him more anxious about eating at all.

Please don’t expect him to share toys with your children even when they belong to you/yours. If he is playing with something for an extended period of time at your home, he may be fixated on it as a source of comfort. In a new environment, playing with the same thing can give him the consistency he needs to feel comfortable.  If he brings a toy, don’t expect him to share that either.

If you find him hiding by himself in a dark and quiet room, don’t try and coax him out. He is quite good at finding a quiet place to get away from the stimulation and he usually needs this time to recover. Cutting him short can just cause him to become anxious or dysregulated.

Don’t expect him to hug you. If you touch him, even if it’s a gentle hand on the shoulder or a pat on the head, expect that he will pull away grimacing uncomfortably. He is extremely sensitive to touch and your gentle touch actually is irritating to him. Imagine that I walked up to you and rubbed your arm with sandpaper. You’d pull away too. This is how his brain processes most touch.

At some point, if he is dysregulated, he may become aggressive. His fight or flight response is very easily triggered.  He more often chooses fight.  Please let me handle it. We have practiced for hours in therapy to learn how to deal appropriately with this behavior.  Your comments and intervention can actually undo work we’ve been doing for months. We do not punish M for behavior that is out of his control. One of the areas of the brain most affected by prenatal alcohol exposure is the corpus callosum.  This results in heavily impaired impulse control. In general, I ask that you try to avoid any and all positive or negative attention to all aggressive and destructive behavior.

If we visit you and M seems happy and regulated, just know that is related to M having a “good day” and also to a fair amount of preparation on our part. It is entirely unpredictable.

Happy Holidays,