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Homeschooling a child with multiple disabilitlies..I need guidance..

Posted by on Aug. 20, 2014 at 11:30 AM
  • 7 Replies

My son MIchael is 9 years old and has severe autism, is nonverbal, has a life threatening seizure disorder, and registers on about a 1 year olds level.  He is not toilet trained, needs me to do his daily tasks (bathing, dressing, changing, feeding etc ect). We just moved from PA to NC.  His seizures are bad.  He is frequently in the PICU (pediatric intensive care unit) on a ventilator because with these seizures that go on for hours, he stops breathing all together.  We have been told 1 and 5 with his condition do not make it, and the odds of fatality increase with age.  He is 24 days seizure today (A WONDERFUL MILESTONE!!!), but was going every 7-10 days having a seizure that would last hours and hours.  We are new to Versed, and with the last 3, he did not have to be intubated and recovered well at home thanks to this wonderful medication.

He is/would be in a classroom labeled "Multiple Disabilities Classroom" to kind of give you an example.  They work on IEP goals (like toileting, pointing at objects, climbing stairs, whatever is in the IEP).  They do a lot of hand over hand things. 

We have a problem this year.  The school will not administer Versed (it would be intranasaly, and is the only emergency seizure medication that has worked so far).  We have tried others like Diastat and it never worked, he would end up on a ventilator in the PICU fighting for his life, still convulsing hours and hours later.  Versed is not prepackaged, and there a numerous steps to draw up the medication, take apart the needle from the syringe, add the nasal canula to the syringe, and administer it.  It's a process, that the school nurse and staff cannot due unfortunately. Which leaves us as parents fighting for our boy and looking at options.

Has anyone here ever homeschooled a child like my Michael?  Has anyone any other ideas to get him to be safe at school?  We are looking at a private nurse to accompany him back and forth to school.  I would homeschool him if that was our only option (it's very hard on a daily basis having Michael, and the break that he goes to school is nice to recoup).  In all honestly all my time is spent caring for him in one way or another.  I spend hours each night watching his seizure monitors.  I spend numerous time each day fighting with insurance, taking him to appointments, feeding changing bathing playing etc. In a lot of ways he is like a 9 year old newborn to kind of give you guys an idea of what our world is like.  I love him and will always fight for him though, and none of this was a complaint, more like showing the reason why the break is nice.

Other than a private nurse and homeschooling I'm kind of out of ideas.  I have calls around all over finding an advocate to help with this entire situation (epilespy foundation and arc of nc). 

by on Aug. 20, 2014 at 11:30 AM
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by Bronze Member on Aug. 20, 2014 at 11:54 AM
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I suggest you join the CM group Raising Special Needs Kids. There's moms there who could give you advice about getting his needs met at school. In some district the school will not provide therapies to homeschooled children and that's another consideration.
by Gold Member on Aug. 20, 2014 at 12:31 PM
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My suggestion is that if you decide to keep him look into a respite nurse who can come in and take over for a few hours so that you can get a break.  I understand that caring for a special needs child is daunting.  Please weigh the pros and cons of whatever decision you are needs to be the right decision for not only your child but your family.

Good luck!!

by on Aug. 20, 2014 at 10:46 PM
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I second both suggestions. The group mentioned is fantastic. The ladies are amazing and will help tremendously. Respite care would be a wonderful tool for you to look into no matter what decision you make. Best wishes to you and your family. I hope you are able to get some good advice.

by Kim on Aug. 21, 2014 at 5:47 PM
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Hugs. I agree with the others.

You can also negotiate with the school district - you can request him to have home/medical care or whatever & they can send a teacher to your house for an hour a day to work on IEP goals.
by on Aug. 21, 2014 at 7:40 PM
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I am an ABA Therapist.  I work with a child (he was just moved off my permanent caseload as of today because of my scheduling..but I worked with him for some time) that sounds a lot like your boy.  He is 9 as well, severely Autistic, MR, and suffers from a seizure disorder although not as severe as Michael's.  He is developmentally about 16-18 months.  There was some consideration of homeschooling him this year, but the parents decided against it.  Mom does need a break, and what they will be doing is half days at home, then half at school (so basically at the school from around 11-3ish...he will also be receiving ABA Therapy before school).  This is enough to give mom a little break, but also give the child what he needs.  So maybe this could be an option for you, depending on the medicine schedule?

Another idea I had tossed around with mom was hiring a tutor/caregiver...this would basically be someone that came in and provided what he needed during the 'school day' so Mom could still have her break and also get all of the household things done.  This would be maybe an LNA or ABA Therapist that could provide services for him-not just a 'babysitter' type of role.  So maybe this could be an idea.  He would be home, where you could give or supervise the giving of medication, but have that person be his primary caregiver during certain hours, where you could get some other things done.

Would your insurance help cover any of these costs?  Another option is to fight for the school district to help cover the expense of him being home or having a private nurse travel with him since they can't administer the medication he needs.

Honestly, I think for a child like this-homeschooling with some kind of tutor/caregiver is really a great idea.  As long as your state allows for just showing progress rather than some kind of proof of him being on grade level or anything like that. 

by on Aug. 21, 2014 at 8:56 PM
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Friends of ours that have a child with similar severe medical needs actually homeschool all of their children and FINALLY got a private nurse approved.   They needed the help desperately.

The only other consideration to homeschooling and a private nurse that I could think of would be a full time institution and care... that is a very hard choice, though.   A family we USED to go to church with made that choice and in their heart they felt so guilty, but it was the only way they could function as a family and give to everyone.  

They took their son home during weekends and set up family visits.   They were extremely hands on and with him, just not as responsible for his medical needs and the routine actually helped their son with situations of acting out.  He seemed calmer and happier after there was an every day routine that he could be used to.

Maybe there is a nurse that would go to school with him, even part time?

by Sonja on Aug. 24, 2014 at 1:57 PM
After all the great advice from everyone, I am not sure I could offer anything more!
*Hugs* My heart and thoughts arevwith you and your family.
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