Back to School

Due to a number of factors too exhausting to list my son re-entered public school this week.

We have hopes for this program. Unlike the school he was in previously, this school uses a block schedule. A block schedule is one in which the child has his core classes 2 -3 times per week on alternating days. The classes are 80 minutes instead of 40 minutes.

We think this will work better for our son. He has ADD and learning disabilities and the fewer transitions he has during the day the better. He is very easily distracted by both external and internal disturbances. There is an awful lot going on in his brain that he will not or cannot express.

This school has a strong administrative team and good discipline. The guidance counselor is on the ball. The school itself seems calm when you enter it.

They use a program called Fast ForWord, which is rather controversial. On the web you will find that it is either useless or a miracle, depending on the information source. I am anxious to see what my son thinks of it and observe for myself whether it seems to help him.

I will continue to blog on parenting and education. I may not be homeschooling for the foreseeable future but I will continue to be very involved in my childrens’ education.  My daugher has one more year of private school ahead of her and then both will enter the neighborhood public high school.  It will be and interesting couple of year ahead!

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.

Sea Change at the IEP Meeting

We went to my son’s triennial IEP meeting. Present were me, hubby, resource and speech teachers, school psychologist and district people. It was startling to say the least. First – we all agreed that the IEP should me “math and writing disability” and not “language disability”. So that will change. The testing I had done with an independent doctor confirmed and expanded upon the testing performed by the school psychologist. I explained my son’s FAE and ADD diagnosis.

The startling change was the culture. I was offered home-bound instruction (with proper medical excuse). I had previously been strongly discouraged from seeking this, which consists of two hours a day of individual tutoring supplemented by parent instruction. I was previously told my son would never qualify, the district would never agree to it because there was insufficient money to provide itinerant teachers.

I was offered part-time attendance. Part-time attendance is not authorized for homeschoolers by the NYS Regents  but apparently it is available for kids with IEPs who are enrolled in school (again with medical documentation). I had NO idea this was possible.

I was told they are modifying the way they deliver instruction within the school day. Instead of “push-in” in the classroom, or pulling the kids out and having them miss core instruction, they will pull them out in groups during study hall time and tutor them then. This is what my daugher receives at her expensive private school (she is not learning disabled but still needs some help).

Well, hallelujah, common sense and flexibility are reigning supreme in my school district! While I have enjoyed homeschooling my son I DO hope he can eventually return to the public school system. There are advantages there for him at the high school level which would be difficult for me to provide.

There has obviously been a huge change in my school district at the district office level. I sense collaboration among the professionals involved. I sense that my concerns are being taken seriously and people are focusing on my son’s needs and not the inner turmoil within the school district. I sense calm and purpose and an optomistic outlook. There have been changes in the staff at the school and at the district level and they have apparently been a good thing.

For the first time I came away from one of these meetings feeling GOOD and filled with HOPE. What a huge sense of relief I have right now!

Back to Reality

Well, it’s been a nice, long vacation. Now it’s BACK TO SCHOOL!

My son just completed his testing for his IEP. They recommend that his IEP designation be changed from “language disability” to “math reasoning and writing disability”. His testing showed us some encouraging things. His reading comprehension has gone WAY up and it was great to see because we’ve put a lot of effort into that. His speech teacher commented that she’s never had a speech student test so well in vocabulary. That’s another thing we’ve worked hard on.

His math calculation ability was ok but his math reasoning ability was very low. Those word problems and abstract ideas are eluding him and that’s going to be a challenge for us because I am terrible at math! Time to enlist his dad. Oh boy, I hope that goes well because dad is a bit disorganized.

Writing is something I can be of help with. The basics of expository writing are familiar and comfortable for me.

The school psychologist wrote that my son’s greatest challenge is his processing speed. He learns everything and can apply what he has learned but he cannot keep up in a fast-paced classroom or perform well on a timed test. I completely agree with this assessment.

I decided to enlist some further help and my son has just had further testing done be a specialist in private practice. I’m lucky that my insurance will cover it under a mental health benefit. I get the results next week and I’m very anxious to hear them. We need to pinpoint exactly how to help my son reach his full potential. Nothing less is acceptable for us.

On a lighter note – we were stranded for nine hours in the Atlanta airport over the holidays and my son, the aviation enthusiast, finally got enough airport time and just wanted to go home.

Triennial Evaluation

My son just had his triennial evaluation for his IEP. It was interesting to say the least. I always wonder how much stock to put in one test given on one day. That’s what we have to deal with however. Que sera, que sera.

He was previously designated as having a language disability. To the surprise of his examiner he scored pretty well on reading comprehension. It was no surprise to me because we have worked so hard on that skill.

They want to change his designation to math and writing disability and at this point I have to agree with them. He is behind in math and and has a particularly difficult time when you get him away from straight calculation. His writing, while interesting in itself, is frequently dismal in spelling, grammar and organization. He is a very good storyteller when he is speaking. I hope I can be helpful enough to him in his writing process and I am looking for materials which will help me. His first love is aviation and he probably cannot become a pilot for medical reasons so to my surprise he has decided to become a travel writer! Since this decision he has written more, with more enthusiasm, than I’ve ever seen.

His IQ scores were up and down and were labeled “severely discrepant”. That means that it is impossible to judge his potential by how he tests.  The future is uncertain.

I do know the traditional college path is unlikely. We question whether he will be able to handle a full course load at a major university, simply because of the stress that causes and the level of organization it demands.   He does not want to leave home and I don’t think he should (unlike my daughter who will be fine wherever she goes). He may spend his first year or two at home, either attending community college or a private college part time and working at something he loves. That’s fine with us.

He also wants to be a volunteer paramedic.  We have a large and well-funded volunteer fire department nearby so the example has been set. He’s the kid who loves to watch “Trauma Center” on TV. He asks as many questions of the doctor as the doctor asks of him. He is very compassionate and nurturing and is never, ever grossed out. Hmmm. Sounds like a good candidate to me!

I agreed to have additional, more comprehensive IQ testing done last week in order to make sure he retains his testing accomodations. In the coming weeks he’ll also have in-depth neuro/psych testing done by private physicians and I’ll be very interested to see the results. My family has always known he is smarter than the tests show. We see sparks of brilliance radiating out from underneath the learning issues. We intend to get a more detailed diagnosis in order to help him shine.

It’s a long and winding road. Never give up.

Recording for the Blind and Dyslexic

I promised a post about this wonderful organization, RFBD. RFBD provides books on tape or CD. They are very different from the CDs at the bookstore. I tried books on CD and did not find success with them. Many are read by English actors, I presume because Americans like to listen to a nice English accent. Many of the books are read in a very dramatic style. This is great for capturing my attention when I’m driving on the highway, but it’s a very bad thing for my son. My child has an auditory discrimination problems and needs nice, clear, American English to listen to.

With RFBD you either get a special player, or download special software, which transforms the reading experience. The books are not read by actors, but by volunteers. Most are nice and clear and free of difficult accents. They are not read in a overly dramatic style. You can use the player, or software, to slow down the reading speed too!

Many textbooks are available and the “readers” include all captions and sidebars and describe the illustrations. It’s easy to replay material and since chapters are clearly labeled it’s easy to find things for review.

If there is book which is not offered you can request it. It may be available shortly, it may take a long time, but at least you can make the request.

In order to join you must have a visual or reading disability certified by a professional. In my case my son’s school psychologist signed his application a few years ago. It does not need to be someone from a school , it can be an independent physician or educational psychologist. Individual annual memberships are $35.00 and there is a one time $65.00 registration fee. All postage is free both ways since it is classified as “matter for the blind”. EasyReader software is $45.00 and is much more affordable than the specialized playback machines. We love it and I have 90% of my son’s curriculum on CD.

When we first started using RFBD, with grade-school novels, I could see the light bulb come on in my son’s head. You could see the relief on his face, a child who was convinced he could not read suddenly found that he could.