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Three boys, one dog, one chinchilla…Sometimes, you just have to STOP…and Count To Ten.
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“HELL!”….that’s the extent of my potty mouth vocabulary.
But…that’s the word I feel like yelling…like shaking someone and screaming it in their face.
What the HELL is wrong with you??
I haven’t written in a while…because we’ve been busy.
A good busy.
Life with a husband that travels all week, a 19 year old that moved BACK home, a genius 11 year old, and a super special needs 6 year old will do that to a girl.
In jest, a few weeks ago….I wrote on my Face book wall, ”
Never in my WILDEST dreams did I really think that was the case…
I have NEVER had to fight with anyone about Isaac (except the insurance company). Our school IEP’s every year have been easy. I listen to the teachers and their suggestions…and agree. We’ve all wanted what was best for Isaac. THEN….this year’s IEP meeting was a little NOT as I had planned.
When did the role of educators become those that DID NOT want to educate?
When did the professional opinion of five different therapists NOT make a difference in YOUR opinion?
When did the special education department decide that only looking at a child for a few minutes would give you the best picture of how they function in class and life?
When did a mother’s opinion NOT matter?
When did you EVER come across a mother who doesn’t work so that she can take her son to individualized therapies SIX extra hours every week (outside of those received at school)?
When did you EVER have to sit beside a hospital bed for months at time….just willing and praying for your child to survive?
When did you EVER prove the doctors wrong year after year…and celebrate yet another birthday?
When did you EVER fight for another person as MUCH as I’m willing to fight you NOW?
NEVER…you will NEVER know that life we’ve lead…
the fights we’ve endured…
the blessings we’ve received…
and the love that we’ve felt.
You only see a boy whose potential is limited….
who’s wings won’t expand to let him fly…
and you are SO WRONG.
So VERY WRONG.
I will show you how much I will fight….
how my sword will shine, my shield will deflect, and my army will rally.
You will be defeated.
You will look at my son with a different set of eyes…
You WILL see his potential….
You WILL want the most for his future…
or else.
Yes indeed. You have been warned. If you’re in the special education department and you don’t want the best for our special needs kiddos…..
it’s time to open your eyes…
or get a new job.
Educators in all fields should WANT to educate.
They should want each and every child to learn as much as they can.
Every child doesn’t learn the same…and adaptations should be made….
and be made with a kind heart…
and with the individual student in mind. (not the cost of or inconvenience to teach them)
Since WHEN did we have to fight for an education for our children?
Maybe we always have, and I just didn’t notice until I had to with Isaac.
and…just for the record…
Here are the current stats for Isaac, the boy who doesn’t need an aide in school:
- Non-verbal 7 year old (in 3 weeks!)
- can’t sign or use assistive technology for communication
- not potty trained
- eats his shirt and wears it wet all day unless teacher has time to change him
- eats his hands all day until they are raw and start bleeding
- has no concept of danger (will wonder off, touch hot things, stand on tables)
- severely autistic (says a very expensive test by a behavior therapist)
- tries to pull out his mickey button daily
- can’t feed himself
- can’t drink by mouth
- doesn’t complain (if he’s hurt, or gets hurt by others)
- he has a broken heart (he’s had 2 open heart surgeries, 13 heart caths, and his heart beats way too fast)
- he wears leg braces (he can walk, but like a 9 month old, very wobbly)
- he can’t blow his nose (it has to be suctioned like a baby)
- he has to be “prompted” to do everything (take a bite, chew your food, look over here, hold this, touch this)
Why don’t I have him in an institution?
Because he’s smart….he’s so very smart. His memory is remarkable, he can work an iphone and ipad like no one. There’s recently been a shift in him…where it’s like his “light has been turned on”. There’s so much this little guy can do….
so much…
and I will fight with all my motherly might to make sure he gets that chance.
Ok…end of the rant for today.
I’d love all feedback.
Am I asking for too much?
All my friend teachers…if YOU had Isaac in your class, wouldn’t YOU want an extra pair of hands on board to help?
(Just for the record…our teacher, principal, and assistants are awesome. It appears they aren’t the decision makers in this matter. IF your child needs a personal aide (paraprofessional)….someone who does NOT know your child decides).
It is hard. I wish my vocabulary stopped at hell. I don’t know what state you are in but tell them he needs a personal nurse due to the g-tube and suction issues and then maybe they will bargain down to a 1:1 aide
Don’t give up Kathy, you’ve got this! I can tell by your “hell no” tone! xo
Thanks Wendi! We’ll have to do a lunch date so I can rant to you in person!
Yes, that would be good. I miss you my feisty friend <3.
Good for you! Never ever ever ever give up, never admit defeat and never let them tell you no! Mama knows best! Keep up the fight! Polish your sword!
Oh Kathy.
I cried as I read this. I just love Isaac and his smart little Gabba-loving mind, and I adore his mama. You are an inspiration and the BEST mom. Isaac is blessed to have you! Keep your sword and your shield held high, Mama! xo
I just wish you lived closer…and we could form a little charter school for our super hero boys!
I cannot believe the school would do that to a child.. From the pictures he looks like a very smart boy. I wish you luck in your fight, and never give up!
I am wondering if you could get a private duty nurse paid for by insurance to accompany Isaac to school? The facts you listed seem to prove medical justification. My daughter’s Medicaid nurse will be traveling on the bus and staying with her throughout the day starting in fall. Ask the pediatrician to apply for nursing hours!
My mom just suggested the same thing! I’m meeting with his behavior therapist this week and I’m going to ask her about it! Genius idea if I can get it to work.
Good for you. As his mother, you (and his father) are his best advocates. Regardless of tests, experts, administrators, and other decision makers, you know your child and have his best interest at heart every single day. It is hard to stand up and fight (and keep fighting) for everything your child needs, every day. But, it is all worth it. You are giving him hope, opportunity, chance, love, and setting a great example for others. Best of luck to you!
Good for you! Fight like hell for Isaac and let them know they will be hearing from your lawyer! Good luck! Praying for ya!
West….. not Wesr…. Sigh
You know that I have a little TOO much of my mother in me…they won’t know what’s coming at them! (but…you know i’ll kill them with kindness)
My oldest went through the IEPs as my youngest. When my oldest went through them everything went great at first. I came to realize issues was going on with the Special Ed teacher herself. I think found an organization after lots of fights with the school called, Family Matters. They actually educated me on IEPs and our rights they also went with me to fight with me. This is when i first realized they had to meet his needs even if it make accommodations just for him in the classroom. I hope everything keeps going well with my youngest. However, as you know there are good and there are bad teachers in the schools. Just remember if we don’t fight for them as the mothers who will?
Thanks Renee. I just hate that we have to fight…educators should want this for our kids as much as we do. But…they’ve made me mad now!
You are an amazing mother! You fight!! I find the school system these days are to easy at giving up on kids. Its sad. They always say its not their job. Who’s job is it?? Keep fighting! Your son deserves the world!
Good for you! I was just reading through your blog, very inspiring. I have a four year old with autism starting school next year. I wish you luck and hope Issac gets the support he deserves
Fight mama, fight like it’s no ones business. Your son deserves a life and no educator should ever turn away a child
My cousin had to fight like it was no one’s business when her daughter was going to school in the IEP department. Her daughter suffered a TBI. It’s ridiculous how the public school systems have turned into. I’m almost considering homeschool when my kids are school age.
You are doing the right thing by fighting for him. Don’t give them any room. You know what he needs and only you can make a difference in this matter for him. Praying that all goes well.
This is beyond ridiculous! As everyone already stayed. DO NOT STOP FIGHTING! I don’t want to begin to imagine what you and Isaac are going through.
They definitely should take everything into consideration especially with special needs kids! You are a strong woman and I know you will fight hard for him!
He is smart! Smarter than most kids older than him I see. He is the luckiest little guy to have you as his mother, his advocate and protector. And no….there’s never too much when it comes to our kiddos!
NEVER take “NO” for an answer…. Keep fighting for your little guy; love you guys and deserve the best!
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