It is natural for Mary Katasse and her family to look lovingly upon a child in the community who is behaving in a way that others may judge negatively. She understands at a deep level the possible struggles of both the child and parents; and she continues to educate us all about difference and the importance of unconditional love.
Her three adopted children — Julian, Christian, and Lexi — all of whom have challenges and deficits because they have been affected by alcohol in the womb, have shown Mary and her family that focusing on their needs and strengths — and ignoring negative behavior — works.
The challenges her children and family experience can be troubling and overwhelming without understanding. Some challenges include regression (reverting to younger behavior when stressed); melt downs; developmental and learning delays; sensitivity to sound, light, texture and over-stimulation; and the need for structure, routine and consistency, as well as trauma due to Fetal Alcohol Spectrum Disorder and abuse.
Despite the challenges, Mary watches and listens for the needs of her children, and their behaviors alert her to those needs. When Julian gets anxious, he will rock back and forth and hit his head. When the family identified it as a form of regression and were able to address Julian’s needs for safety and comfort, the behavior diminished considerably.
To address the effect of the piercing pitch of sirens, the family used Julian’s strength of “caring for others” by repeating, every time there was a siren, “the fire trucks are going to help someone.” Eventually this clicked, and while the noise still bothered him he was no longer afraid, and the melt-downs stopped. Over time, he learned to self-sooth. Family members would put their hands on his head, tell him to breath and to count from 10 to zero. Then, through visual imagery, they would throw the scary sound, or negativity, away.
While Lexi is also learning to self-sooth, Christian has not yet learned this valuable skill and can regress. When that happens, they give him what he needs — cuddling and holding, spoon feeding or whatever else he needs. One evening, Mary couldn’t understand why Lexi was not eating her dinner (they had spaghetti, her favorite meal). She just sat there, almost as if waiting for something. This was quickly remedied, however, when Mary realized she hadn’t cut Lexi’s noodles, which was the routine. Routine and consistency both at home and at school are critical. Toys are often put into time out instead of the children when the kids argue; and each child has special time with parents.
Providing supports and accommodations to limit overstimulation are essential and require ample planning and preparation. A trip to McDonalds, for example, may require a week to adequately prepare the children for a successful trip. They will be repeatedly told where they are going, who is going to be there, what they can expect and what is expected of them. Practice may be part of this preparation.
Upon arriving at McDonalds, Mary will show up with her three children, probably Grandma Judy or another family member, and her felt-tip pen. The pen is used to initial the Happy Meals and apple juice, a creative strategy to prevent the three from accidentally sipping their brother’s or sister’s juice or, heaven forbid, taking a bite from the wrong meal, which could easily result in multiple meltdowns and make for quite a tumultuous evening for the entire family.
Annual trips to visit family in Hoonah by ferry require even more time and planning. A visit to the doctor’s office, or any other event, requires similar care and preparation. Any one of the family members will pitch in and participate in preparing the children.
The structure at home and school are very different, which can be confusing for the kids. Frequent talks with the teachers are important to keep things as consistent as possible. Each year before school begins, Mary meets with the teachers to discuss the children’s needs and brain differences and gives the teachers tips and strategies for success. She lets them know what they can expect from her children, what works and what doesn’t work, and informs the teachers what they can realistically expect from the children.
The children are introduced to the teacher and their classrooms and are allowed to familiarize themselves with the environment before the chaos of the first day of school commences. They learn where their coats and backpacks go and the location of their table or desk. Julian is visual, so his area was outlined with tape; that is how he knew where his spot was. This year, however, he no longer needs the tape. In addition, Mary always lets the teachers know they will be learning a lot from her and her children, and they should not be afraid to ask for help.
Small accommodations, as the result of teachers and parents thinking outside the box, have helped Julian. Head phones, for example, have helped him with his sensitivity to sound. The daily evaluation using smiley and sad faces and checklists has been replaced by a written daily report. Julian didn’t understand the sad faces and couldn’t remember what happened in school. The written paragraph reframed the daily evaluation to communication between the parents and not an evaluation of Julian.
“Now, instead of a math evaluation that states Julian was only on task for five minutes,” Mary said, “we can say ‘wow’ five minutes today, let’s do 10 minutes tomorrow.”
Mary reminds teachers to focus on successes and what they are accomplishing, no matter how small. All three children want to please, and they will naturally strive to do better. It is a confidence builder for them. Mary is adamant that the children can only concentrate on the immediate focus, and if that is negative, that is what will be manifested. If the focus is on the positive, that is where the children’s attention will be. Mary attributes Julian’s success in school to the unbelievable support he had last year and to his teacher Alex Newton. Next year, he may be tested for “gifted and talented.”
Despite the hurdles her family and children experience daily, Mary is adamant about teaching her children to “pay it forward.” She believes her children are a gift and they have much to teach others. Every year Julian hands out gloves, socks and hand warmers to people at the Glory Hole. Last year, as part of the Russian Christmas celebration, the children decorated 55 paper bags for residents and four gift bowls for the nurse’s station at Wild Flower Court and filled them with apples, bananas, candies and cookies. This grew from Julian’s natural, caring tendency to give elders water at the Gold Medal Basketball tournament. Now they pass out lunches or gift bags at Gold Medal.
Mary recently presented at the FASD Family Voice Forum at Centennial Hall. When asked what advice she would give other parents, she said “to continue to speak up for your children; it becomes easier over time. If you have a hard time speaking up, find someone who will advocate for you and your children and learn to advocate for yourself.”
We should all be so lucky to experience the power of love that permeates the Katasse household. If every child was immersed in a loving environment, every child had their strengths identified and nurtured and they were all taught to embrace and accept difference, what would our world look like? Anyone who knows Mary will often hear her say, “Whatever my children need, they will get.”
And they do.
According to Mary, “There are no small accomplishments in our house; we celebrate everything.”
• Alex Pastorino is a retired educator and member of the community FASD Working Group. She can be reached at firstname.lastname@example.org.