Homeschool Community

We are new to homeschooling.  I first thought about homeschooling my son whom has Down Syndrome, Brittel Diabetic, Spina Bifida Occulta, Obstructive Airway Disease.   I wanted him to have the social skills from going to school, but for the last year, he is in Kindergarten, and was in young 5's last year, seemed he was constantly getting sick and not getting any better after several doses of antibiotics.  We live at the doctors office any way but I felt as if that was my knew home.   He was hospitalized in November and found out that he has a rare autoimmune disease and the doctors where supprised that he has made it this far.  I guess I have done something right.  So the school is sending a teacher once a day for an hour a day.  That doesn't do him any good.  He needs constant schooling through out the entire year.  But what do I know, I am just his mom.  Any way.  I am on the road to bettering Josh's mind and body.  If any one has any suggestions let me know.   By the way the school only had him at a 16 month old level.  He is 6 almost 7 and is a year behind in some things and 2 years behind in others.  He just refused to do anything for the school.  I felt terrible after I reviewed his IEP and realized how they thought he had no vocabulary or skills.   He never shuts his mouth at home or anywhere else.  I guess this is why, he didn't talk at school.

The vandivier family

Dear Christie,

I read your post this morning and my heart went out to you.  You are juggling far more than anyone I know!  Are there other children in the home as well?

Have you considered asking the visiting teacher for more activities, projects that he could do at home?  Because he does talk a lot at home, it sounds like he is curious and wants to interact with you.  If the "schoolish stuff" came from you, and you kept it light and fun, he might willingly cooperate.  And there's no reason why you couldn't work with him throughout the year, even without the visiting teacher.  See if she will be your ally in teaching your son.

Because he does sound curious and involved, how about starting with reading to him A LOT.  Start with books below his level and get him hooked on spending that special time with you.  Most of the stuff we learn in school can be learned from reading anyway.

If you decide to take the plunge and homeschool full time, stop by again.  There are lots of special needs math and reading programs out there that could be a help.  

Whatever you decide to do, I hope you take regular time to put your feet up and pamper yourself a bit.  Let us know how you're doing.

wheatonmomma 

HI there!  I am a homeschool momma of 2 special needs boys.  Both of my children are diagnosed w/a rare autosomal recessive genetic disorder called Joubert Syndrome...this affects the dev. of the cerebellum...therefore, causing many other neuro. based issues.  I have been homescholing for several yrs. now and wanted to let you know that this can be done!  There is a wonderful book out there written by Sharon H. Hensley, M.A. called Home Schooling Children With Special Needs. This book really empowered me to continue on with homeschooling.  I purchased it via HSI's store.  I noticed that after I took my son out of public school (where he was receiving many services!) and allowed him to relax and not feel pressured...his learning took off!  When dealing w/spec. needs it is a slow go sometimes...but try to keep in mind that any forward movement is progress regardless of the pace.  I hope that you keep posting!  I think that you will find a great support network here at HSI...Best Wishes!

~a 

I have already started with Joshua's schooling this week, I still have the services of the school for this year which gives me time to set up OT,PT and speech for him this summer and Then it is all our schooling summer on.  When he started school last year I told them they had to set down the rules asap and not let him lead.   They were getting to know him as they say, and he wasn't really forced to do any thing.   Well now this year, they decided to make him do things and he refuses.  He has won that battle.  They just didn't know what to do with him.  I tried telling them last year, you have to be firm from the get go or he will think he can do what ever he wants.   I have lots of schooling supplies and book, I have been getting since he was 3 do to not knowing what we were doing with him school wise.   The ideas and resources you have I would greatly appreciate.   Thanks for your input.   Christie and Joshua

Thank you for your reply.   I have already started Josh in the swing of our school, the nice thing is, I don't have to wake him up and begin the fight because he is still tired.  He also has autism,  I really see him more relaxed with the teacher that comes to our house, she has seen him do more then the school has seen him do in a year and a half.   She just couldn't believe how much he can do.  She said the school told her his learning ability was very delayed, I just laughed and said that is what he wanted them to think.   I have always said" Josh does what Josh wants on Josh's time."  The more you push him the less he does, so if you make him think he did it on his own he likes it.   He loves to help so we play teacher a lot, or school.  He teaches me what I just showed him.  It works and he is learning, and then he teaches his older sisters.   I have josh 6(7 in Feb.) Kate 9, Ash 16.   Kate has ADD and Audio Processing Disorder, I really am considering homeschooling her next year.   She does really well with the one on one or in small groups, 3 to a group.  But she is really struggleing already and they aren't really helping her any more.  She has started cheating and she knows it is wrong, but her answer was I don't remember the answers or doesn't want to do the work because it is to hard.    I went to school to be a early education teacher, special education ontop of that.   My goal was to open a developmental preschool in our area, do to the fact we have to drive at least a 1/2 hr. to get to one.  I also drove the school buses  bigone and handicap for the school.  I am now doing nothing, well let me say I am now doing the normal here(doctors,house up keep, josh)  That is a full time job.   I am trying to find something I can do from home in the evening and on weekends.  I am a single mom and need to have some income my car doesn't put gas in itself and my bills doen't pay themselves.   If you have any ideas I would really appreciate them school wise or job wise.  My ex comes and helps with the kids in the evenings and is here on the weekends.  I wish he would have been this helpful when we were married.  We would still be married.   He is a great dad though and is really excited about helping with Joshes school.     Thanks for the ear.   Christie

Thanks for the welcome!  To answer your quest. re: the physical aspects of JS...yes, there are ramifications.  It varies with each indiv. as to what the effects may be physically.  For those that are lacking the cerebellum all together well, the outlook is grim (assisted breathing, little to no mobility...the cerebellum is a part of the brain stem that controls balance/coordination etc.)  B/c my children tend to lean to the milder side of JS (where the cerebellum is present just underdev.) there are only traces of physical issues such as, low muscle tone (aka - hypotonia), visually they both have Ocular Motor Apraxia (OMA..difficulty coordinating eye/head movements...makes reading really interesting!) There are issues with their gait as well.  Some people w/JS (not all) will experience kidney/liver failure etc.  Usually JS is a part of other genetic issues...or as in my children's case it is believed that they have the pure form of JS (not mixed w/other genetic issues).  Both of my children have autistic tendancies...sensory issues, cog. delays as well as, fine and gross motor issues.  Verbal expression and processing can also be an issue but not always.  That is the basics in a nut shell so to speak...if you would like to know more you there is a foundation set up and they have a very informative website.  It is www.joubertsyndrome.org 

 Blessings,

 ~ a