Fetal Alcohol Spectrum Disorder (FASD) and Education

I’ve been asked about the changes in my son’s IEP and why the school did not catch things earlier (they actually did) . . . SO. . . lets give a timeline.

We adopted my children from Russia when they were toddlers. They displayed no outward signs of FASD and in fact were pronounced healthy by Dr. Jane Aronson, a famous adoption specialist. My son received early intervention services for speech and occupational therapy at age 3-4. Once he got into kindergarten those services continued but by 2nd grade he no longer needed the OT. He had intense tantrums on a regular basis which lasted for hours and exhausted us. He would kick the wall, destroy furniture and bite and hit himself.

His first grade teacher noticed problems. My son had a very difficult time reading and recongnizing patterns of any sort. Be they colored beads, numbers, or letters on a page, he could not recognize and repeat a pattern.  1st grade is where you really learn to read and he was just not learning. He was evaluated and labeled “LD Specific Language Disorder”. This entitled him to “resource” starting in 2nd grade. Resource is small group tutoring either in or out of the classroom. His behavior was sometimes baffling. There was a Thanksgiving play in the classroom and we eagerly attended. He had one line and he was clearly anxious to deliver it. When it was his turn he ran and hid under a desk and began crying and hitting himself. What we did not understand at the time was that due to his working memory problems he forgot his line and panicked. I look back and I feel so sad for him.

Unfortunately he had a diving accident and shattered his femur, spending half of 2nd grade in a wheelchair with first an external fixator on his leg and and then in a body cast. His tantrums worsened. This injury, combined with his LD ,caused him to repeat 2nd grade – luckily with a wonderful, very special teaching team. This also caused him to be in the same grade with his sister.

Third grade was ok, his teacher was frustrated by him but he seemed happy and appeared to be learning. His services continued. So did his intense tantrums. He was briefly placed on an anti-depressant and and anti-anxiety medication.

Fourth grade was not ok. Not at all.  His teacher refused to follow his IEP. He was tested in class instead of separately with someone to read him the questions. He was required to read out loud in front of the class. He came home every day and completely “lost it” the moment he stepped through the door. He began to act up in order to be sent to the principal’s office every day just before the “read out loud” part of class. He preferred to get into trouble than read in front of the class. I tried meeting with the teacher, the principal and the school psychologist. The problems continued. I had two choices – pull him out or go to battle with the school district. I chose to pull him out and homeschool him for the 2nd half of 4th grade. It went very well, he calmed down and began learning. He was happy. I discovered “orthoptics” and took my son for treatment. This involves eye exercises to strengthen the muscles which control the eyes. It worked like a charm and suddenly my son could read. He had been seeing double and was unable to explain it to me due to his language deficits. He was placed on an ADD medication but it was too sedating.

Once again, 5th grade was good. He had an excellent teacher, his services continued, the school went out of their way to please me. My son’s reading steadily improved. We requested that both our children have the same teacher in order to simplify homework and such and it worked out pretty well. Their grades were good. However, my son continued to have intense tantrums at home and auditory and visual hallucinations and he was placed on an anti-psychotic drug. He began seeing a therapist twice a month. We believe now that his hallucintions were stress-induced.

Sixth grade was an utter disaster. The teachers were overwhelmed by changes in the school and administration and that resulted in a loss of discipline and respect within the school. There were fights in class. My son’s resource teacher allowed way to many distractions. Continual disruptions in the classrooms plagued both my children. Their grades and rest results slipped. By the end of the year both of them told me they no longer felt safe at school and they asked us to take them out and let them go somewhere else. How could I leave my children somewhere they did not feel safe?

So – here we are. 7th grade. We placed my daughter in a private school, something I never, ever thought I’d do.  Because of the extra attention she receives there we noticed her learning disabilities, which had previously gone unnoticed in the public school system. She has to work very, very hard for her good grades. The school tutors her after school three days a week in math and Spanish.

My son is homeschooled. He was re-tested for LD and his results changed. I also had him tested by a private educational psychologist and received more detailed information and the FASD diagnosis. He is reading well now due to orthoptics. He has tested out of speech services. His biggest problem now is mathematics. He has a very difficult time with abstract concepts and working memory. He still is not proficient at recognizing patterns. This makes things like learning times tables nearly a pointless effort. We’ve been working on it for three years and he still can’t remember them reliably.  He can perform straight calulations but mathematical thinking is still beyond him. His ability to learn a process, and repeat it the same way every time, is a problem. He has difficulty telling time on an analog clock and difficulty handling money. We have taken him off the anti-psychotic and placed him on a stimulant ADD medication. It seems to be working. He no longer has tantrums or tries to hurt himself.

It’s not that the school didn’t notice. It’s that the schools are not set up to deal with FASD. They treat learning disabilities as things that can be fixed, or at least improved, with enough teaching and drilling. They don’t recognize that kids with FASD may not be able to read facial expressions and social cues. They can’t relieve the anxiety of a child who cannot understand playground interactions  and cannot work in a group. FASD is not something you fix. It is brain damage, not a developmental disorder . These kids need strategies and support, not drilling and standardized testing. They need the kind of individual teaching and loving attention that a public school simply cannot provide.

I wish my son could go back to public or private school. I really do. Homeschooling is a huge responsibility  and although I’ve enjoyed it I don’t see myself teaching chemistry and calculus.

Here is what I’ve learned. We need to listen to these kids because they want to tell you what is wrong but they don’t know how. You need to roll with the punches, you need to realize that many of them hate themselves. They are smart kids whose brains frustrate and embarass them and they don’t know how to cope because they are just kids. They need a calm, stress-free, predictable environment and parents who can remain steady in ridiculous, embarassing situations. They need you to let them feel bad sometimes and have a good cry about their situation but stay near if they need you. They need you to realize that they may repeat a grade, may not graduate on time or finish college in 4 years and may still need your support when their friends are long gone and on their own.

They need you to take care of yourself so you can take care of them. Don’t forget yourself. Take your vitamins, get out sometimes even if you just go to Starbucks all alone and enjoy a latte for an hour.  Excuse yourself, go to your room, and have a good cry. You don’t need to have your kids think you are indestructible. They need to learn that Mom (and Dad) have their limits too. I had no babysitter for years because nobody could deal with my son. I ran away to  Barnes and Noble on a regular basis where I had a latte and cruised the books for an hour or two. It helped. Go to your doctor and explain the situation if it gets to be too much. There is no shame in needing a sleep medication or some Xanax now and then. If your kid is in therapy you may need some therapy too.

Above all – just keep on keeping on. There is a part of me that thinks of all the things that could be different and then there is a part of me that thinks this is what I was put on earth to do. To raise these children. Desiderada says “No doubt the universe is unfolding as it should.”

I try to remember that.