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Another FED UP mom joining the community (very long)


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#1 mommanessy

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Posted 05 February 2014 - 12:13 PM

I cant tell ya'll how happy it makes me to be able to FINALLY find another option of schooling. up until i found this site i NEVER KNEW there WAS a 3rd option law. I'm so jumping on THIS opportunity like white on rice!

Our Story...

While still in living in California, our son arrived in 2004 (after a stressful pregnancy & a harrowing & chaotic birth), we knew this one was just...things were just gonna be different. Our son was thin at birth (but had a nice length & weight) & nothing else about him was close to normal & despite our best efforts, following all the advice given on feeding him & taking him on long train trips to specialists for test after test after test & after several emergency hospitalizations...we ended up losing him to childrens services when he was 9 mo. old. We were shattered but with the strength of my family & my experience in the foster care system myself growing up i knew our ONLY option was to fight furiously. Fight for everything, for us, for OUR son. We fought the courts & the whole system, we struggled to prove that they were wrong.    

It was while in foster care that our baby was disagnosed with a rare genetic metabolic disorder & the doctors looked back at everything in the his medical history & were able to say that everything he had, low weight, low muscle tone, developmental delays,... could be explained by this diagnosis. THEN childrens services basically went "oh you didnt do anything wrong.[shrug] sorry." & our son was returned to us but that 11 month long fight did us some major damage.

We were horribly scarred & traumatized by it all & it was at that point we stopped trusting everyone. Anyone that wasnt already in our very small inner circle of close family & friends was blocked out of our lives or kept at a distance. We withdrew like a turtle in a shell. Through those early years we slowly gained more knowledge about the disorder our boy had & continued doing everything we could to keep him healthy. He was only able to get Early Intervention therapy services but never received physical, speech or occupational therapy. Fast forward to 2009, we were provided with the opportunity to move out here when my husbands parents offered to buy us a house out here. We didnt need any time to think about it, we immediately accepted the offer. Although it meant leaving MY family behind which had been a major source of support for us through all of our troubles, we HAD to get out. We settled in very quickly, eager for this fresh start & hopeful in new opportunities & a seemingly better school system. Our son was being constantly tested by doctors & specialists & it was when he was 7 that he got his Autism diagnosis & we were also told he had moderate-severe mental retardation. Initially our reaction was sadness & a little bit of despair. We looked at each other silent for awhile & as is our way, we quietly acknowledged each other's agreement to do what we do best, persevere...together. We had no idea where this Autism journey was gonna take us but having already been to hell & back we were like "Bring it on." Automatically we again became very protective & careful & defensive where our son was concerned, fearing the worst but praying for the best & fighting for what we could. 

Through a couple more minor open & shut case referrals against us to childrens services we gathered together a new support system, a vast team of doctors & specialists all working together to help us cope & learn to live with our severely disabled non verbal autistic son. Over the last 2 years we've seen a new alarming condition show up in our son & through another battery of tests & 2 more brief hospitalizations, we've been told that he has some kind of non epileptic seizure episodes linked to his metabolic disorder. He takes medication for it as well as 2 other meds to control his impulsive & aggressive behaviors. While it is all finally starting to level out our newest source of problems ended up now being our son's school. The teacher, who he's had for 2 years now & the nurse, dont seem to grasp the concept of what needs to be done & how to deal with things especially where his seizure episodes & their triggers are concerned. We've been manipulated & bullied through the IEP's & now I'm just done. With the help of my son's behavioral modification therapist, I will be withdrawing my son from the public school system  this year & will turn to the 3rd option homeschooling to take control of his education here at home. I've got a nice array of supplies & tools here now & a decent plan/setup as well as support & encouragement from the team of doctors & our families.

We have a young girl now too bringing our total to 3 (including my oldest daughter from a previous relationship) & our youngest little one has also been diagnosed with the same genetic disorder as her brother & with autism as well but the upside is that, while she seems to be non verbal so far too & somewhat delayed in her development the vast amount of  therapy (physical, speech, occupational & early intervention) she's received over the last almost 2 1/2 years is helping quite a bit. She will surely be higher functioning in comparison to her brother which gives us a ray of hope for her future.

Do to these unfortunate odds with our genetics & enduring another rough pregnancy, I made the decision that we were done having children & went under the knife for a sterilization procedure. With that out of the way we could focus on what we currently have & while it is still overwhelming at times, i think we're finally taking baby steps in the RIGHT direction with the decision to homeschool our son.

 

This homeschooling community & the opportunities here help me continue to be hopeful that we can FINALLY start towards a journey of healing, peace & good things for once. With my faith & our willingness to overcome all obstacles put forth & our proven ability to triumph together we hope we can finally do something right for our young guy.

He's 9 now & a great boy. Very loving towards his baby sister & everyone he knows. 

 Heres to a better turn in this journey & a hopefully brighter outcome. 



#2 Dianna

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Posted 05 February 2014 - 12:33 PM

I'm so sorry you've been through all of this, but applaud your perseverance. Be sure to post here whenever you have a question along the way.

 

Warmly,

Dianna



#3 mommanessy

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Posted 06 February 2014 - 08:06 AM

Thank you. I will absolutely be looking into all these topics here & learning whatever i can out of this. I'm a new sponge, ready to soak up some knowledge :) .



#4 Mommaduck

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Posted 06 February 2014 - 10:08 AM

(((hugs))) and welcome!



#5 Dianna

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Posted 06 February 2014 - 12:11 PM

Also, read through my FAQs at http://www.carolinah...r.com/afaq.html

 

For a more in-depth guide to homeschooling (includes typical days, different methods, favorite resources, dealing with issues, etc.with input from hundreds of homeschool parents), I have a guide available: Homeschooling Essentials, A Practical Guide to Getting Started   It's available in paper, ebook, and audiobook. If you're an Amazon Prime member, you can get it via free loan.

 

Warmly,

Dianna