Wednesday, January 06, 2010
Not much to say, sorta grumpy...
Have I mentioned how competitive SR is? He is, last night we went bowling, and I brought my game. Here he is trying to be goofy and choke me out!
This is SR deciding he would love me, even if I was the most AWESOME bowler EVER....
2nd trip to the psychologist, they trashed the ADHD, and put us in the Asperger's bucket..
And I the Mom, the one that should be capable of fixing everything, and picking him up and dusting him off...sadly feels like a failure.
And even though we, or HE has made GREAT strides, no one will ever know...unless you journeyed with us.
He can swim, ride a bike, sit through noise, sit in a theater unbothered by how FREAKING loud it can be....his IQ 160. He knows sadness, sarcasm, joy...even from others. He shows empathy, kindness, and tenderness, which are not typical with children with this diagnosis...
so now I am stuck...do I continue to do this through bureaucracy, or do we continue to work on this as a family team...
The problem being, any school will not make exceptions for much without a damn piece of paper. 2 mentors are not enough, this kids brain is the hungriest I have ever seen...he is bright, and curious...
Please no comments, on how your child's diagnosis has been such a great thing for them, and how great an IEP is...your child is your child. How an IQ of 160 means nothing, and IQ indicates nothing. I am not in the mood to hear how I need this IEP to figure out how my child learns etc...learning is not the problem in my home...if he wants the information, he consumes it, if he need guidance we are there. He teaches himself at his own rate, along with what we teach him, and school teaches him...Our problem lies in other places right now...
As a Mother a part of me, wants to pack up, move him off grid...and home school, and let him be, the other part of me, thinks I should cooperate with the system, and see what happens. His ability to do great things...is HUGE. I understand this. I do not want to FAIL him. My biggest fear in this life is failing my children.
Also this post could very well be removed very soon...because at this juncture, I am tired of everyone with normal children thinking they could "fix him, if I had him for 2 weeks" , I am tired of everyone telling me how their child is doing with a similar diagnosis...your child is not my child...
Posted by Rachelle Jones at 11:08 PM
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No negative comments here.
I am in the same boat.
2nd trip to the psychologist, they trashed the ADHD, and put us in the Asperger's bucket.
They did that because ADHD is so a last decade diagnosis. Asperger's is all new and fresh again. I am just a slightly bitter about tests and the appointments and all the garbage that the Childrens hospital and the school officials put my kid through.
My advise to you would be to go with your gut. If you think that both he and you could do well with home schooling mentally, finaciantlly and scholastically then do it, and don't listen to all the 'normal' kids parents.
I'm here for you. Behind you 100%.
Trust your heart.
Actually, I've been thinking Asperger's for a while with your posts. The biggest thing is how freakin' SMART he is!
I'm sure you know this, but all these people had suspected Asperger's and went on to do amazing things in life: Albert Einstein, Ben Franklin, Isaac Newton, George Washington, Andrew Jackson, Andrew Johnson, Abraham Lincoln, James Garfield, Teddy Roosevelt, William Taft, Harry Truman (hey, maybe he'll become President!), da Vinci, van Gogh, Beethoven, Shakespeare, etc.
You are an awesome Mom, and you've managed to do more with SR by yourself using your gut intuition and knowledge of your own child than many parents do with the entire local medical and school community involved.
You are GOOD at parenting him, it's just not easy. And when things aren't easy it isn't difficult to lose sight of the amazing path you have traveled in the exhaustion of looking at the path ahead.
You will decide on your own, and you will do the right thing for him - because you have before, every time.
No judgment from me. I think that the whole situation is a testament to your phenomenal parenting, how willing you are to do what's best for SR. I hope that the way will become clear about his schooling. I have no doubt you could homeschool him well, if you chose to. The only other thing that came to my mind, was wondering if a private school would be an option? Would they be more likely to have more resources and work outside of the rules with him? Just throwing that out there. Lots of hugs and support from over here!
I'm just a frequent reader here; don't know you in real life, I'm not a mom, I have no "advice" to give.
I hope this doesn't embarrass you -- and feel free to not publish this comment if it does -- but of all the mom-bloggers I read and enjoy, I have the most admiration and respect for you and the (*real,* responsible, unpretentious, creative) way you raise your beautiful children and love your DH.
Life can really bite the big one sometimes (to say the least), and I'm so sorry you're going through this. But your little man is exceptional, and you are an exceptional mom, and you serve an exceptional God who will prove Himself even stronger in your weakness. You will love SR through whatever decision you make and whatever educational path you choose, and God will be standing right there with you -- and in that, there is NO failing your son regardless of the circumstances or outcome.
Praying for your wisdom, your peace of mind & heart, and for your sweet and brilliant child....
No negative comments. Just hugs as you travel on this journey with your awesome son!
Have you seen the Prufrock site?
I have never tested my kids but they are smart...And not really challenged. So I use this for "extra' stuff.
What everyone else said about you.
I vote you go off grid. You know him better than the system does. Why bother with bureaucracy?
Well folks, I appreciate your tenderness here....just so you know. This is tough enough, and frankly SR and I are tough enough on ourselves, without added criticism. for those in similar situations...it is an exhausting journey.
I handed this to God a long time ago. I had a feeling about the Asperger's years ago....In good news, many of SR's issues have resolved themselves. Many sadly have not...
He continues to charm those around him, which may be his only saving grace.
Say a prayer for our family, and those involved with him on a daily basis..
I want people to be patient, and kind...
I also might add here...I know I am blessed.
God has heard me, and answered every prayer I have ever had..
I am remembering this...
I've been reading you for about two years now, but I don't comment.
I just wanted to give you a pat on the back. You are doing a fantastic job with SR. His amazing progress is proof of that. Whatever you decide to do, you will be doing what you believe is best for him, and that makes it the best decision for your family. Go easy on yourself. Anyone putting as much thought & effort into their child's development as you are CANNOT fail.
Agree completely with AFW.
For whatever my advice is worth, I was one of those borderline kids that everybody thought was a bit different, but nobody ever came up with a label that fit/stuck. Looking back at my experiences as a teacher in a large public school after having been raised in VERY small private schools, I think finding a small private school or homeschooling him is definitely worth STRONGLY considering. Larger schools (both public and private) are about making people fit in to the right boxes. There are only a couple of boxes that are SR shaped in the entire world. I doubt the local big school has one... at least a flexible private situation would give him the space to create his own.
If the Asperger's diagnosis is correct, you have done a PHENOMENAL job with him--using just your intelligence and instinct, you have obviously found the right buttons to help him better understand and function in a world he experiences differently than the rest of us. That is no small feat, and you are awesome!!!
You'll always find a the right path because you really care, you are smart yourself, plus have a strong faith. As long as the public school with mentors etc works you will be helping the school people learn as well -- but at the end of the day you have to go with what is best for your family. Thank you for this blog.
I hear you and understand...I think you have and continue to do a wonderful job with your children. Do not let the "system" dictate to you how you raise/deal with them or their education. You know them best...go with your heart! You also know what is really important, so prayers and hugs for you and yours!!!
You are the best teacher he will ever have. No one loves him more. No one understands him better. No one knows better when he needs understanding vs. when he needs discipline and at what rate that can be expected. We took an economic hit when my wife left nursing to homeschool our kids and we had to get by on my O-2 pay. Twenty years later, no regrets. The institution is geared to the average rather than the exceptional - it has to be. SR is anything but average. I'll be praying for you.
I'm with AFW too. I have always thought even before I really, truly knew you in real life, that you LOVE your kids and that you have taken the time to get to know them. If I knew that before I 'knew' you, I know that they both feel it and are all wrapped up in the warmth of what that means.
You are flexible enough with the kids to let them be who they are and to follow along beside them, gently guiding their way.
You will make the right decision because you land on your feet & will work hard with whatever it is that comes your way.
And, you know whatever that is and wherever it takes you, I'm around for anything you need.
I have a friend whose son was thought to have cerebral palsy and has since been Dx'ed w/ Aspbergers. Shawn is a lovely boy, with a great sense of humor, but he will never set the world on fire.
Your son sounds like he will go far. Get yourself a copy of the book 'Look me in the Eye"! It is awesome and really gave me a different view of the spectrum of the disease.
I have been reading about you and your wonderful family for a couple years now. You have done an amazing job with both your children. Follow your heart on this one, you are the only person out there who knows your little man top to bottom. He is a bright, funny, energetic little boy and even though there may be people out there who think they know whats best for him, only you know for certain.
In all of my life - and I've been around a while - I don't think I've ever met a "normal" child. They are ALL unique, special and different. As they should be.
You're doing good, keep it up.
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