Skip to main content

Basic Instincts

When Ben turned three years old, his services were turned over to the school system. This transition meant a new school placement for Ben.

We have been incredibly lucky to have had caring case managers, teachers and therapists to work with Ben since he was a baby. I trusted their ideas and suggestions. At the big transition meeting to determine a new school for Ben, this group told me that there was one school Ben just had to attend. From what they had heard, it had the best teachers, therapists and reputation.

I visited this school. I left knowing that something was not right. I could not put a name to it, I could not tell someone why, when asked. I questioned this doubt, pushed it aside because everyone else knew better than me. They'd been doing this longer.

At first, we sent Ben there five days a week, and slowly, moved to two days a week for a couple of hours, then yanked him out quite abruptly. Three years later, I have perspective on this experience. At the time, it consumed me. Here’s what I can say now:

1. Do the research. Know your options.
The group at this transition meeting (including me) had tunnel vision for this one school. If we had all our information, we would have learned about a public school within walking distance of our house with a special class just for Ben with a wonderful and caring staff.

2. Visit and ask questions.
Many decisions have to be made for your children, special needs or not, and it is necessary to see for yourself what type of people will be caring for your children. Visiting is good, but asking questions is key. Ask to talk to other parents, ask about turnover rates, staffing, daily schedules, progress reports, etc.

Make a list of questions based on what is important to you. After this experience, when it came time for kindergarten, I met each teacher and principal with a typed list of questions. I visited the schools more than once. It took time, it was exhausting, but I learned a lot.

3. Trust your gut. Or those little legs and arms.
Everyday that I dropped Ben at this school, I wanted to cry. I knew he did not like it even though he could not talk. At his previous pre-school, his little legs and arms would move frantically when we got into the parking lot. That was how I knew he loved it there. His legs and arms did not move when we were at this new school.

4. Everyone is entitled to their own experience.
Am I angry with the therapists that led me to this school? Do I hold a grudge? Absolutely not! They were just passing along what they had heard from other people. There are many families who have had incredible experiences at this school who have gone on to volunteer there and raise money for the foundation. And their children probably did well there. But for our Ben, it was not a good fit.


After we ended Ben's studies at this one particular school, he was able to attend the public school around the corner. That school turned out to be a very special place, where the people who worked there were like angels ready to take Ben (and our family) under their wings.

Comments

  1. This is EXCELLENT information!! Thank you for spelling out how important it is to trust your gut feeling when it comes to school and your child with special needs. Staying involved, visiting the classroom several times, asking questions and paying close attention to any gut/intuitive feelings are vital. I've been there several times with my own child who has Agenesis of the Corpus Callosum.

    I love how you say trust those little arms and legs. :) Great post and wonderfully written.

    ReplyDelete
  2. As valuable as this is for families with special needs children, it is equally valuable for families whose children don't have special needs. If ALL parents were this interested, this concerned, this questioning, ALL public schools would be better places.

    ReplyDelete

Post a Comment

Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.

Popular posts from this blog

Catching up with Ben

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he's can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me

A Lesson on Supplemental Security Income

In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch. Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars. Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru