Help with School
I loved school when I was a kid. Now, I find that I hate school. I am not quoting my twins here, I am stating that, as a parent of special needs children, I HATE SCHOOL! I hate what school is like for my twins. It is an unsupportive place for my twins with FASD (Fetal Alcohol Spectrum Disorders). The twins hate school, too. They are not able to articulate why, but they struggle about going every morning. It is much better than it used to be, but for the longest time they have been labeled as the oppositional child who is not willing to do what is asked. The school sees behaviors, not symptoms of a disability. Teachers view their symptoms as willful purposeful behavior. I have had to slowly, respectfully (well, sometimes this gets hard to do when things are going very poorly) and tactfully try to leak some FASD info to them over the years.
When I think back on it now as they are halfway through the 9th grade, it really has not been a supportive environment for my twins overall, EVER. (Sorry, I think there will be a lot of capitalized words in this blog post, unless I change it to bold letters. We’ll see!) That is not to say that we have not had supportive staff who try to help. But they are uninformed about what turns out to be the primary diagnosis for my twins, and 2 ½ times more prevalent than autism. The invisible disability of Fetal Alcohol Spectrum Disorder.
The word school is triggering for me. “Do I have to go to school tomorrow?,” phone calls from school staff, incident reports, comments on home notes, assessments that state behavior is avoidance oriented, attention seeking. Individuals with FASD use 3 times as much energy just to BE at school, ignore noises, focus on directions, sit still, understand directions and tasks. When they are struggling at school, I always ask “what was happening before this struggle, and before that, and look back even further before that. When I get the entire story, I can often see where they were not supported enough to keep plugging along. Believe me, I know most people don’t have to do that with children at age 15, but I know that I do. I know how much support they need because of their brain deficits. I know how often I see that they have memory issues that complicate them in everyday life. That is probably the A #1 Issue in school where they are trying to build on past knowledge, which unfortunately is knowledge that my kids often cannot access.
Advocating for school support has always been part of my parenting job, at first because we did not have any diagnosis's. Then we got some that were only part of the whole picture. First, it was ADHD, and the urging was to medicate. My twins were born at 32 weeks, small for their gestational age, with drug and alcohol exposure and were removed from their parents. The powers that be at school tried to bully me into medication. “Not medicating your child when it is recommended is like not filling a prescription for glasses, Mrs. Eriksen.” Well, tell me about the side effects of glasses vs the side effects of medications on my babies already affected little brain! We eventually ended up with lots of medications, and that is so challenging. Starting meds, increasing, or decreasing doses, looking for side effects, and positive changes is a long and bumpy road.
Soon after that, I was seen as the “problem.” “Mrs. Eriksen, do you use consequences with the twins?” ARE YOU KIDDING ME????? How do you consequence a child behaving like a dog to keep others at bay? Put them in a doghouse? How do you go with a consequence for things that your children do out of fear? Running out of a classroom that is loud and very busy is a trauma reaction, not a disobedient child who is either seeking attention or avoiding work (according to all the behavioral experts at school). They are scared to death!
As I learned about attachment and trauma next, I more fully understood the pain of any child not living with their biological family. The primal wound is so deep and so real. Right after birth for my twins, or whenever a child Is removed from their home, they are taken away from all that is familiar to them: Their parents' voices, music, smells, sounds of their home, literally everything is removed. Everyone thinks it is so wonderful when someone adopts a child and feels that the new parents give them what they so much need. But there is also so much loss for these children. I am not really advocating for family reunification, per se, although there are certainly times when that is applicable. It never was for my twins, and rightfully so. That is a topic for another day. Attachment, however, is another matter. I do not look or sound like their birth mother. They are part Hispanic and have always been drawn to Spanish food and music. Like it or not, there could be many aspects of who I am, my temperament, chattiness (I certainly have the gift of gab!), interests sometimes are just glaringly not compatible with them. I certainly cannot expect them to adjust to me as much as I must adjust to them. “Poorness of Fit” it is called. Sounds kind of sad to me but it is absolutely true.
I had a hard time attaching to the twins, and they to me. My son was a fussy, irritable baby. I wore him forever. He was clingy forever (until the teen years now!) and for most of his young life, he slept with me. My daughter does not like to be touched. I thought she was such a good baby, but now I feel so badly that she did not really seem to want me or trust me. She recoils if I try to hug her or caress her.
From attachment therapy, I learned about felt safety. We can “be” the safest, nicest, most caring person under the sun, but if our child doesn’t “feel safe” with a person or in an environment, it does not matter that WE know it. They need to feel it themselves, and oftentimes they cannot.
When we got the FASD diagnosis, I thought it would be helpful because THEN we would get the right supports, staff, school programming and IEP (Individualized Education Program) goals to really reflect what the challenges were, with a plan on how to move forward. The diagnosis got us nothing, because the information that schools have about supporting individuals with an FASD is not there. None, Nil, NADA. Just more work for me to try to advocate and educate.
But that is not the worst of it! Every year that my children are incorrectly supported in school is a year that the twins cannot get back. Every year that they feel less than others because they just do not “get it,” they just have failure after failure.............until they feel that they are a failure, and just start to give up. A little at a time.
Don’t get me wrong, I also see that I, too, was not aware of how I needed to parent them differently. Until we got the correct diagnosis. Then I read and studied, attended conferences, and joined coaching groups to learn about FASD. Schools are NOT AWARE of updated information, and do not like to be told what to do, what to train staff about, and certainly do not want to hear that they do not know everything. Jeez, I do not know everything, but I certainly will not let that stop me! GOOGLE it for God’s sake! Research what you don’t know!
What I learned that is probably most important to discuss with school staff is that alcohol affects the brain AS IT IS DEVELOPING, so there are permanent changes there. There is enormous hope for people with FASD, but the way to get the best results is to have proper support and accommodation. And that is where the walls went up in school.
Schools so often have a “Wait and see” mentality. They are waiting for children to REALLY fail before they investigate further. They are trying to teach to the masses, even if they say that they individualize. The old adage of trying to fit all the square pegs into the round holes. I get that initially, but when you keep pushing down on those square pegs, you are trying to ignore their shape, mold them to fit in. That is certainly not individualizing.
Many families in our support group are struggling a lot with school issues right now. This blog is for all of you. Some of the tips that I have after this long rant:
Learn all that you can about FASD.
Read “Trying Differently Rather than Harder” by Diane Malbin.
Join FASD support groups.
Get an FBA (Functional Behavioral Assessment) from school, not because it will be valuable information, but because schools want them done. They will tell you how the behaviors are attention seeking or avoidance behaviors. Here is where you may face your first battle. Our kids are not showing behaviors, they are having symptoms of their brain-based disability. There is an enormous difference. Calling it behavior infers that it is willful, purposeful, and manipulative. It is NOT. Staff at schools need to realize that we need to say symptoms and then determine what is causing that symptom. Too much noise, hunger, disagreement, confusion, misunderstanding, sensory overload, time for a break? Then make those accommodations. They may need different accommodations each day. So, they need someone with a close relationship to them to be able to see the cues that it is time for accommodation.
You will also need a full neuropsychological battery of tests. I hate to say it, but if you need an FASD diagnosis, you need to ask about it or it may not be considered. In the short term, I would try to get a pragmatic language assessment and sensory integration assessment. These will show where some of your child’s difficulties stem from. Then, talk to school about the importance of relationships as mentioned above.
The other suggestion is to get informed through the many FASD podcasts, books and support available, most notably around the world.
This is Jeff Nobles school PDF Understanding me: my FASD
(https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.fasdsuccess.com%2Funderstandingmefgb%3Ffbclid%3DIwAR1cVwxhqSs7H71dO-JAGVIRTcac6dzYDaG418D8Cb6IV9VqE0cvwUOtvTE&h=AT3_pwZ4DEzlBDJhPxmz5eBQCVqPoeboMIN_Y7oyKkHgXVyNMkHmgA9lBa2rvFSI6d0BpJqNB20kayNQDA9Kf3IzrkV1d2Z_9G8THXjDXKRpex9O3VAlKN8MB3lDxT_HqBanQZKQPVE&__tn__=R]-R&c[0]=AT1m6-9AH2L_ArOSpRZHCq51lVejuZyOF_hVAPDQpGCWmD3DUvd7zwc-ceWtlCTUnIsPmUvbJu5erOpAChjk5kdP7N1dz5NUtJThyiK1u2vd3x9j_mmXYcktteQCTS3zY8L71VqmTgjDsVgvz3aJ_3mqvYRTKi2Lz-kW11lTfIMLSXB0SNSF)
https://www.fasdsuccess.com/podcast: Episodes about schooling-
30 Sheila Burns “My Kind of Mind”
52 Tracy Mastrangelo
81 Natalie Vecchione and Cindy LaJoy “Homeschooling kids with Disabilities”
91 Danna Ormstrup
118 Mark Courtepatte
Natalie Vecchione has a podcast and authored a book about homeschooling that is very well recommended. https://www.fasdhope.com/ Her book is called “Blazing New Homeschool Trails. It is available on Amazon at https://www.amazon.com/Blazing-New-Homeschool-Trails-Developmental/dp/B096LYJCJW. Homeschooling is not for everyone but seems to be a great option for many people with FASD. Who knows them better than their parents?
This is a good start to what families need to know about helping at school. We have some great handouts on our website, and I can share more later. Please reach out to us for help as well!