When Neshama, our eight year old was in first grade she couldn’t read.Teachers met with her privately and she got as much extra help as we could offer her.
She still couldn’t read.
The year came and went and soon it was time for second grade. But Neshama couldn’t go. It was so difficult telling her that she would be held back. An unusually mature child, she understood right away.
The entire year whenever anyone would ask her “What grade are you in ?” She would say “First, but I’m supposed to be in second.”
At that point she had extra help in school but it wasn’t until midyear that she was diagnosed with Dyslexia.
Dyslexia is a funny thing. I often think it’s the condition reserved for creative brilliants of the world. You see these kids, geniuses; intuitive, smart, perceptive, mature – yet when to reading it just doesn’t go.
First grade (the second time) was tough. Second grade was tougher. By the middle of the year we were desperate. We had to find a way to help her to read. She had one on one reading teachers in school and a volunteer tutor (thank you Barbra Wallenstein!) from the Dyslexia Tutoring Program once a week. She had a specialist from Kennedy Krieger work with her (thank you Jen!) It was completely uphill.
Although she began picking up skills, the demands of second grade kept increasing as well. Anytime she was not with a one on one tutor, the work in front of her looked like a foreign language. She would ask for help and the teachers, although they were as accommodating as they could be were busy.
They would say, “Try and figure it out yourself and then I’ll come to you. But she just couldn’t read Chinese!
By midyear she was depressed. She was angry. She would leave the class to go to the bathroom and roam the halls until she was caught. At home she lost her sparkle. There would be flashes of sun a midst the darkness but when I sat down to talk with her she would vent her anger at me. “I wish you weren’t my mother!” Which I understood as “I wish I didn’t have to struggle so much!”
Every night she would cry herself to sleep. I don’t know if you’ve met Neshama but she has a rare and special glow about her. She says these things like “What a beautiful day, I’m so grateful!” And “Aren’t we lucky we have this gift of fresh air?!”
But those comments were fading quickly. In their place came anger, frustration and negativity. she would often say “I can’t live like this anymore.” Or ” You don’t know what it’s like to be me. It’s horrible!”
Around that time the principal called us in for a meeting. She recommended a few things. Among those was that Neshama see a therapist and also that we apply to Jemicy for the coming school year.She explained that Jemicy is tailor made for kids with Dyslexia and that she had seen incredible success with the kids she’d sent there. Many of them were even able to come back and be integrated into a mainstream school after a couple of years.
We got to work. The first thing we needed was a physiological and educational evaluation. No problem, we thought. Except it turned out that the testers that they recommended for the tests that they required costed $4,000. All of the sudden it got complicated.We didn’t know what to do. At that time we just couldn’t afford that testing.
It was too much for our large family to manage. After many inquires we found out about certain clinics that would take insurance. We called them to find out if they administered the tests that met Jemicy’s requirements. No answer. I won’t put you through the whole story but it was a story.
Months of paperwork, back and forth, offices closed for snow days and more trying to get her evaluations done. Then it was time to get the results. All this needed to be done before we could even have a meeting with Jemicy. (Thank you to the fantastic IEP team of Baltimore City who did everything they could to help us!)
Waiting waiting… In the meantime, Neshama was failing. The will to try was snuffed out. In its place was a little girl who felt terribly misunderstood in the world. Her behavior declined and the principal wisely suggested that she only come to school for half a day. That way she reasoned, she’ll still feel like a part of things, but making her stay seven hours when she wasn’t getting the material was too much for her.
She was moody, she was defiant. She was sad. We hoped taking her out of school would help – but unfortunately it wasn’t enough I looked into getting Dyslexia training but I understood that my skills were too little, too late. I had to deal with my reality: I work, I have other kids to care for and I have another child with high needs who takes up all of my non working time.
In the meantime, everything got more intense. She felt like such a failure. she spoke about not wanting to exist anymore. By the end of the year the therapist strongly suggested we see a psychiatrist. Neshama spoke about self harm. It’s a horrible, powerless feeling watching your child suffer.
Every parent knows it. I kept saying “G-d, I know You’ll help her because she’s Your daughter too. “I just kept praying. I just kept praying.
Finally, in May we got the test results back and immediately sent them over. We went to visit the school and we were elated with what we saw. The place is brimming with positivity and compassion. There’s an office dog, an actual dog for kids to spend time with if they get too overwhelmed. Science class takes place outside near the stream. And inside the classroom there is a hands on approach to teaching that breaks words down in a way that kids can understand. Kids who had come in miserable were walking out succeses’.
We couldn’t wait to tell Neshama. We knew it was expensive but we were hoping for a scholarship or a miracle. We just knew this was the place for her. They understood how to help her.
One month later we get a phone call.”We got your paperwork but the school is full. We’d love to take her but there just is no room. Registration actually closed months ago.”
Panic, sadness, more praying.
The summer came and slowly Neshama decompressed. Her old smile returned and in her childish way she trusted that we would find her a school. She was sure it would be Jemicy. Every night she spoke about it. We never told her it couldn’t be, we just said,” It looks like they have no room Neshama, please pray very hard.”
Her old school had us sign forms stating that they couldn’t serve her needs anymore and she was officially discharged. We had no clue what to do.
Until last week.
Last week we got a phone call from Jemicy. “A space opened up in the third grade and we would love to have Neshama.”
The dream of all dreams!!!!!
I am overwhelmed even as I write this for the great kindness G-d has done for us. This is literally a lifeline. We had no other place to go. It’s a dream come true. At the last moment it all worked out.
Now we have until August 14th to pay for it. We need help. By Thursday, August 14th we have to pay $17,000. a bit more than half the total tuition. All this happened so suddenly and now we are praying for a miracle. We don’t want her to lose this chance. We are begging and pleading with the Universe that this works out.
We’re not fancy people that usually deal with these sums of money and yet we need to do it. We know that there are amazing people out there. We have no idea what to expect, we just know we need help.
I would never in a million years think that I would be making a fundraiser for myself – but I am. That’s how much we love Neshama.
Please can you help us? I mean it when I say her life depends on this. She’s the one who taught us about hope and we remembered her words. “There are always people who love you and want to take care of you.”
Dear friends, Thank you so much for being those people for us and may we all be able to be there for each other in times of need.
Love, Rivka Malka and Bezalel