My 6 Year Old Has Epilepsy. I'm Starting to Feel Defeated and Inadequate.

I think you need to stop and breath. You are taking on everything all at once by yourself and its too much. Your children have a father. He should be involved in the day to day care of a disabled child.

You took him out of school because you were tired of fighting for him. Honey, you are going to be fighting for everything he needs forever so get use to it. Put him back in school and every time they don't do what they should call or go in. Squeaky wheel. The more you complain the easier it'll be and the more results you should see. Everyone thinks school is there to be helpful. Nope they are there to do the minimum amount for special needs kids so if you don't stand up for your child nobody will. Not to mention that by taking him out you are cutting out a lot of his social time with peers. Very important when they are young.

See if your boss is open to different working hours, possible part time coupled with telecommuting.

I'm focusing on one part of your post because it has become a bigger topic for you in your other question today.

"I pulled him from kindergarten last week...I was tired of fighting the school...after months of trying I finally said "forget it"."

After *months* of trying?! There are moms on here who work for *years* on IEP and 504 plans.

It just sounds like your "decision to homeschool" was made in haste and in anger. I encourage you to take a deep breath, put your son back in school, and think calmly about your decision. Especially because your oldest daughter is about to need your hands-on assistance with her surgery healing process.

You really have your hands full, and I sympathize with the juggling act of working vs. raising kids as a single mom.

A couple of points:

1) Talk to your son's neurologist or pediatrician (or both) and be sure that a team coordinator is appointed to collect all the info from different specialists. This is often a social worker through the hospital. There is no way you can be expected to keep all the info together. Do get a 3-ring binder and create sections, just like we did as kids before the internet, and include a section on visits (with lined paper so you can write notes), one for lab results, one for relevant school info, etc. Have a list in the front with all of the specialists and school offices, contact name and phone number. If you don't have a calendar app on your phone, put in a calendar as well. Have a zipper pocket for things like DVDs of scans and other non-paper items. Carry this with you to every appointment. There's always someone who can't open a disk or whose fax machine was out of paper - I just went through this with my husband and I can't tell you how vital this was.

2) Find out about support groups for parents. Also find out about an advocate to help you negotiate services. You should have a team at the school - even if you home school, get squared away with services your district must provide, such as tutoring and other help.

3) When I was teaching, I had a child who had multiple seizures - we made plenty of accommodations for her. I ran into her the other day at the March for Our Lives, and she is doing great! So there is hope!

4) I have several friends who have used CBT for their kids (different issues). One is just starting but there are a bunch of us in a Facebook messenger group just to keep tabs on her and her son, and quite a few of the parents have mentioned good results with CBT.

5) If you feel that upset in the car again - PULL OVER! Please do not drive when you are agitated or emotional! A friend of mine just totaled her car and had to take her daughter to the ER for plastic surgery - so it happens even to good drivers.

6) Take care of you - enough sleep, enough good food, and enough respite time away from your kids. Don't feel guilty. The best thing you can do for your kids is take care of their mother.

7) If you home school, get connected with home school groups and share the work/materials. Some of them have a political or religious agenda they want to impose on others, but there are also lots of people home schooling for other reasons who can be resources to you. I have one friend doing it because her son was in a serious accident a few years ago and has headaches and is now legally blind, and another who home schooled 3 kids to give them a more creative approach to learning. There's a really nice woman on Mamapedia who home schools - if she doesn't contact you through this or the other question, message me and I'll reach out to her. We've had a number of private conversations over the years and she's the real deal.

8) Please change your post to remove your child's real name. This is an anonymous internet forum and it's just not a good idea to have a kid's name and home town in a public forum.

Wow, that is a lot to deal with. Sending you strength!

The school district is required to provide an education for your son. If he is missing class then I would think the district would be required to provide a private home tutor. (My SIL is a FT teacher that tutors a child with health issues after school hours). Call the Department of Ed in your state and at least find out what rights your son has re: education. The school district unfortunately will not always be honest or tell you what he’s entitled to because it comes out of their budget. Best of luck!

I'm not sure how you are making it on $1300/mo with 4 kids, but I guess that is none of my nevermind.

As far as SSI goes, if you get EVERYTHING they need for review, and your child truly meets the criteria, it will take less than 45 days and unlikely to get rejected. I filed for both our younger boys and both were approved within weeks after the paperwork was filed and the interview happened. I was well organized with medical records and school reports and simply had no issues at all.

I agree with some of the other posters that perhaps your pulling him from school may not have been the best decision for your WHOLE family. We fought for years for services for our boys - jeez, you only made it for a few months into kindergarten. That really isn't putting up much of a fight. If you are thinking that homeschooling will make it easier to get the SSI check, that simply isn't true - both my boys were in school full time when they were approved in 2nd and 3rd grades.

If you don't want to work, fine. If you just want to homeschool, fine. But if you do it for all the wrong reasons (or are not prepared or qualified), your child/children will be the ones to suffer.

Good luck.

Wow! That is so overwhelming. My son's challenges are very different, but I do understand the frustration of searching for answers and the feeling and terror that you will never find them.

My so is on the Autism Spectrum, and I remember clearly the years before we finally found the right help for him. I was so emotional ... all the time. I didn't know how to help him. I didn't know who to turn to. It felt like every doctor we talked to, every therapist, every teacher just sounded like they didn't know either. Like somehow our son was so unique and no one had ever seen anyone like him. At first I thought, "That's crazy. Surely someone has seen behavior like his or challenges like his. SOMEBODY has to know how to help my son!" But the more we sought answers, the more discouraged I became. I really started to wonder if things would ever get better. I didn't give up!!! But I definitely felt like giving up. My son had a lot of behavior problems, and I strongly considered home schooling. I just didn't know what else to do, and, like you, the school was calling me every day.

Then one day, I finally met the right person. At first I thought, this is too good to be true. But we took a chance and trusted her and followed her advice and transferred our son to her school and WOW!!!! Words cannot describe the impact that one decision had on our lives! Our son still has challenges, but it's been just over 2 years since he transferred school, and he has made amazing progress!

I think you have to go back to the doctors and demand better. The meds they gave you aren't working. You mentioned that the one his is on is the strongest possible dosage. It still could be that a different med would help him more. There are a variety of epilepsy meds, and it's very likely that a different one would be more effective for your son. It's also possible that there is another way of treating him.

Please go back to your doctor and try some more. I have trouble believing that your son's epilepsy is just so different from every other case of epilepsy in existence that the doctors just don't know what to do. I had to remind myself of that. My son is a special, unique person (lol) but he isn't so unique that no doctor, no specialist, no therapist had ever seen behavior like his.

I would be terrified at the number of seizures your son is having. I can't even imagine. And the doctors need to be addressing that. Your son deserves better. Keep talking to the doctors UNTIL they find better ways to help your son!

oh, wow, A., that IS overwhelming! i so admire you for making the decision to homeschool under these circumstances. i completely agree it will be the best thing for your son- and your whole family, at least once you figure out how to make the finances work.

one of my old neighbors and besties had this happen to her older daughter, although she was in her teens when the epilepsy began. they too were in pretty desperate straits financially. they were able to qualify to get a seizure dog, who has been a lifesaver in the most literal sense. zero cost. look into that.

i have no practical advice to offer, but you certainly have my full support.

with a career you love, is there any way to talk to your boss about even a little part time work from home? not feasible for many careers, but there are also aren't many who can say that about theirs. surely your passion for the work will help tip the scales in your favor.

i'm rooting for you, mama!
khairete
S.

I'm sorry your family is going through this.

My son has a friend with epilepsy. He was diagnosed in elementary school. It took a while (a year or more) to get it under control with medication.

Where your son was diagnosed in fall 2017 and just had test results in Feb. I think you might want to give it some more time.

They can give combinations of drugs and even if some are not the 'strongest' some others might be more effective. It really can be a matter of trial and error for some people.

My advice would be hang in there. I personally wouldn't take him out of school. He's going to struggle - yes, but it's about encouragement for him, and the other kids will have to learn empathy.

Keep on the neurologists and be your son's biggest advocate - both with the doctors, and at school. I would keep your job. I don't think you need that stress right now.

That's my personal advice.

I would see where you are at the end of the year. Make the decision when he starts grade 1. Reevaluate then. I think you'll have more info - at least where his health is.

Best to you.

Paragraphs make things so much easier to read.

I think what you need is a support group so you have other parents who have epileptic children to talk to.
They will understand the challenges you face.
Seizures don't stop kids from going to school.
You need to work with the school to have an IEP in place and get as much support from the school as possible.

https://www.epilepsy.com/living-epilepsy/parents-and-care...