Special People Parenting Special Kids

#Follow Friday – Special Education Advisor

May 20, 2011 Author: Kyron | Filed under: Education, Legal, Resources

Special Education Advisor sm #Follow Friday   Special Education AdvisorThis week since I’ve been in IEP mode and education has been the all consuming activity,  I thought I’d feature the website Special Education Advisor.  I think aside from working on my own blog the majority of my week has been either dealing one on one with kids or reading the Special Education Advisor and devouring all I could on all those foreign terms – IEE, Due Process, RTI. I have a few letters I’d like to throw at the school right now but I digress icon smile #Follow Friday   Special Education Advisor Dennise, Doug and a whole community over at SEA provide an invaluable treasure trove of articles on definitions, acronyms (those pesky letter combinations) transition planning, law, definitions and so much more. If you can’t find something on their site they even have a premium membership for the cost of $24.95/month which allows you to ask questions and get an answer within 48 hours.

If all the great information on everything related to IDEA, FAPE and more weren’t enough to make you rush to click on the link let me tell you that subscribing to their newsletter (there is a box for this on the front page of the website for this) will get you even more great articles and information… some of which is not directly related to Education but are fascinating and  relevant like this recent article on Neuroplasticity. Honestly, it’s amazing to me this treasure isn’t more widely known. I hope this recommendation goes a little way towards rectifying that and giving parents dealing with the public education system an excellent resource to avail themselves of.

Special Education Advisor

on Twitter at @SpecialEdAdvice

Thank You, Mom by Procter & Gamble

May 19, 2011 Author: Kyron | Filed under: Disability Groups, Inspiration, Television

If you haven’t had a good cry recently, pull out your box of Puffs because Procter and Gamble have a commercial campaign that’s at least a 3 hankie kind of commercial. Better yet their Thank You, Mom campaign on Facebook is going to help donate $250,000 to Special Olympics. All it takes is each of us clicking on the link and “Liking” their Facebook page. For each “Like” Procter and Gamble will donate $1 to Special Olympics! Well worth a minute or two of your time to help out a great cause! Please let’s make sure we get 100% of that money for the Special Olympics Athletes by clicking on the link above!! Now for the video…

Don’t say I didn’t warn you!! Hope you have those Puffs ready!

Confronting cruel, shameful and rude behavior

May 18, 2011 Author: Kyron | Filed under: Advocacy, Inspiration, Magazines

Fotolia 11040362 XS 150x150 Confronting cruel, shameful and rude behaviorYesterday, when talking about Donovan’s IEP, I admitted that I avoid confrontation. Well I said I actively avoid situations involving confrontation. Frequently I wish I was more the person I was in my youth….ready to slay the dragons. Maybe moving out of New Jersey has softened me over the year. I think it’s why I so admire people like my friends Terri and Denise. They never seem to be unwilling to take something or someone on if they feel a wrong has been done. (of course they haven’t left NJ….so maybe that has something to do with it icon smile Confronting cruel, shameful and rude behavior )

I also find people online who are worthy of that respect and admiration. People willing to go out there and take on people who think that judging people and how they act, parent or otherwise conduct their life is worthy of mockery. Now please don’t misunderstand, I think it’s necessary to judge some behavior – when it’s reckless, and potentially puts a young life at risk. Botox in a child not even into double digits to help them compete in a beauty pageant comes to mind. But we are frequently hard pressed to find someone willing to talk out about intolerant, rude behavior. Over the weekend I became aware of a someone I have long admired online had been willing to once again put herself out there and take on another website whose whole purpose was to trash “talk” and picture kids in strollers who she had determined the child was too big to be riding in.

Salon.com highlighted this site. They thought it was hilarious! They felt it spoke to “the grating trend in overbearing parenting culture”. Then the Today Show started the question Too Big for Stroller or Too Judgy about parents. The woman who runs the “Too Big for Stroller Blog” (I’m not linking it here but you can get it by visiting any of the articles I link to within this) admits she’s not a parent – I think that’s what really started my indignation with this site. I think the other thing that upset me was how vivid my recollection was of desperately HUNTING for a stroller large enough to fit Katherine in. We got this HUGE jogging stroller that would allow Katherine to ride in a stroller until she was at least 8 and maybe even 9. I remember being reticent to give it up when she was 10 but I didn’t want to pay to move it to Georgia. Katherine’s low tone just made it a huge struggle to do anything that involved any extended walking and a wheelchair wasn’t something she needed full time or that I could afford to invest in. I guess I was being mocked and ridiculed all those years and I didn’t realize it. I have to say though what Julia Roberts (no, not that one…the other Julia Roberts of KidneysandEyes.com and Support for Special Needs.com) wrote about this particular website was so honest and candid  I couldn’t begin to replicate it but I think it is so important to share it. Terri Mauro of About.com did too! Julia’s response also included this great Facebook page – Just Right for Stroller. If you have pictures you want to submit, she’d love to see them!

Hey, I get comedy….ok at least I think I do even if my husband might disagree. icon wink Confronting cruel, shameful and rude behavior Frequently the funniest comedy is created by commentary on real life. That being said, comedy is a balancing act, a fine line. Cross that line and it ceases to be comedy and is just rude, hurtful and often cruel commentary. Plenty of comics will tell you they KNOW when they have crossed a line and the further over that line the harsher the reaction. I’ve heard the girl running this blog is upset over the backlash. Yup. Nuff said.

My other gut reaction is that when you ok intolerance in one instance, it has the effect of excusing further intolerance. And that’s how bigotry and hate grow. What a great thing Julia did by saying NO – I won’t let it go unchecked, unchallenged. I hope we each take a step in that direction. Letting people be themselves and loving humanity for the beauty of diversity what an amazing world that might be. Naive possibly. But if I am I plan on living with that naiveté. Its how to create the best world for my kids to live and thrive in.

 

Postscript to Flying without an IEP

May 17, 2011 Author: Kyron | Filed under: Advocacy, Autism, Education, Legal

IMG 0221 150x150 Postscript to Flying without an IEPYesterday was a complete whirlwind of activity. My husband and I had been discussing going without an IEP for weeks and feeling any number of feelings – ill, morose, crotchety, anxious, unconvinced, fearful, and overall just tense about the whole scenario. I can honestly say I just KNEW it was the wrong decision.  I do appreciate why the school district feels they way they do.

My little one, he is the polar opposite of his sister in almost every way I can imagine. Katherine is my attention seeker, attention grabber, in your face vibrant personality child. Everything about Katherine is bigger than life, from personality to her disabilities and illnesses. She does NOTHING halfway. Donovan is shy, reserved, sweet, and except for playing Star Wars – is everything mild and calm. Which makes Donovan a constant balancing act. With Katherine, her disabilities are so obvious, so in your face. With Donovan I frequently get the question “Autistic? Are you sure??” And every time I begin to think maybe…..nah. It’s there. It’s just mild, it’s not in your face, constantly obvious. For that reason I feel guilty, even now, because Donovan inadvertently gets the short end of the stick too often. I think it’s not unlike a neurotypical sibling or the wheel that doesn’t squeak. Sometimes, it honestly just gets overlooked or doesn’t take the priority over the profound and overwhelming.

Yesterday, a really amazing woman who I will have to find a proper way to thank sent me a DM on twitter and told me in essence – don’t give it up if you believe it’s needed. You can always ask for an IEE (Independent Education Evaluation). Oh heck, sometimes the answer is in front of your face and you miss the forest for the trees!!

I am NOT a confrontational person. I’d go so far as to say I actively avoid situations that would put me in that role of confronter. Maybe that’s why I didn’t come to it until literally minutes before the meeting yesterday. Nope…I just wasn’t going to agree to ending the IEP. I let myself for any number of reasons bow to the pressure of the IEP team. I’m happy to say with a nudge and a quick phone call to the hubby when it counted, I did my job and advocated for Donovan. While it didn’t come to an IEE yet, the school has agreed to a complete reevaluation of Donovan to determine need for services before his birthday in August.

I came to a few lessons out of the past 24 hours…some of which may help you.

  • Don’t go to IEP’s alone. You don’t necessarily need a paid advocate with you but don’t put yourself into the position of being the only person on your side of the table. Bring a friend or relative for moral support if nothing else.
  • Don’t keep your own counsel. Open up to others – other parents, professionals, friends – even twitter! Best thing I could have done was getting commentary from all of YOU! When you’re in the middle of it you just don’t see it the same way as an outside pair of eyes. Tunnel vision can happen to anyone.
  • DO remember you’re the only voice your child has. BE the voice no matter how far out of your comfort zone you need to go.
  • DO TRUST YOUR GUT. If for ANY reason it doesn’t feel right make sure you listen to that voice. NO ONE knows your child better than you do.

Thanks to everyone that took the time to get their thoughts to me. Especially Dennise Goldberg. It made all the difference. I’ll keep you all up to date on how it goes from here.

Flying without an IEP

May 16, 2011 Author: Kyron | Filed under: Articles, Autism, Education, Legal

IMG 0132 150x150 Flying without an IEP Today is his last day of Preschool and my last IEP meeting…

My youngest was getting ready for school this morning in between complaining of a stomach ache. He’s not sick – thank goodness, just a good ole case of the nerves. All the time I was trying to build him up and encourage him about what the future (in specific Kindergarten) brings I couldn’t help but feel like vomiting myself. Today I have his last IEP meeting… at least for now.

My son Donovan was diagnosed with Autism back in 2009. At the time I thought he was just very shy and introverted. He had such a rough time with the preschool we had enrolled him in. Getting him out of the house each morning was a test of wills. He acted like he had just been saved from a torture chamber many days when he was picked up. I knew it was a safe school, a good environment, a wonderful teacher. I just thought he was having a little problem adjusting. For almost a year. You’d think I didn’t have a kid who had special needs already. I was blind, oblivious. The beating I gave myself can be another post…I digress. Then we took a vacation which turned our world upside down. We still refer to it as the vacation from hell. It was the first time we had taken him out of our regular routine, our little corner of the world – and it all came out. Looking back, I thought maybe he was a little off on the drive to Savannah. It was a 3 hour drive from where we lived and we were driving in the evening. I figured it was just that he wasn’t sleeping and that’s why he was “off”. The next morning in the hotel room, I tried to convince myself he was just sleep deprived. By the end of that first day both my husband and I were ready to end the “vacation”. It was feeling more like a medieval torture device than rest and relaxation. It took three hours to calm Donovan down in the hotel room that night during which time I was fairly certain someone who had the room on either side of ours would almost certainly call and complain and insist we be kicked out! The whirling dervish ran out of whatever it was that was powering him and he collapsed but it was another hour or two before he was completely out and it would be months before my nerves would start to heal. Something was wrong. I took him to the pediatrician the day after we got home who sent him for evaluation and one month later the spectre of autism was no longer just something we had by proxy through Katherine. It was something we had in our day to day with Donovan. He was evaluated by the Student Support Team in the public school system and he started in a special education preschool. And now we’re at today.

The IEP has given us the tools to help Donovan thrive

Donovan has made great progress. He’s far more social than he’s ever been. He no longer hates going to school. He has even progressed to the point where he will walk to class with his teacher instead of needing either myself or his dad to take him down to the classroom in the morning. By every reasonable measure he’s succeeding in preschool. Great right? Yea, mixed bag. He’s doing so well he’s losing his IEP today which means he no longer qualifies for services and is being “kicked out” or graduated today.

I’ve racked my brains for a way to keep him under an IEP. It’s not that I’m not thrilled with the progress he’s made. It’s just that I have incredible concerns that those gains are going to be lost when put into a regular class next year with 20 or so of his peers – and no support system, no back up. In this last ditch effort, I’ve been searching WrightsLaw and Google trying to find an answer. I finally found the answer. It just wasn’t necessarily the answer I wanted. A tweet gave me the information I already kind of knew, but had forgotten how to verbalize. It wasn’t that Donovan didn’t have a diagnosis of Autism. It was that his diagnosis didn’t mean he qualified for services. Doug Goldberg wrote a great piece at the Special Education Advisor on Why someone with a medical diagnosis might not qualify for an IEP. If you’re struggling with your child being in what I now refer to as the murky middle, maybe this article can help you too. For now I just hope and pray that the lack of the safety net doesn’t bring us crashing back down. Meantime I’ll keep verbally painting bright, exciting pictures of a phenomenal Kindergarten for Donovan in which he’ll be given the opportunity to thrive and grow and learn. Maybe if I speak it enough we’ll both believe it.

sharrock family 150x150 Extreme Makeover Home Edition and Osteogenesis Imperfecta

The Sharrock Family

My love of this show is no secret…..It’s wonderful to see deserving people get a hand up and to have an hour of positivity on television but most of all it’s wonderful to have a reality show that reminds of the best in each of us and the many blessings we each have.

The Sharrock family of Rossville, GA, a small town on the border of Tennessee, were in for the surprise of a lifetime. They were slated for an Extreme Makeover! This week the show took on a wonderful super hero comic book theme based on the love the family had for them. The Sharrock’s son, Patrick, has Osteogenesis Imperfecta (brittle bone disease) and their 50-year-old crumbling house had become a major landmine for him. A severely sloping floor was just one of the many challenges the home presented that made it unsafe for Patrick. Of course that’s where Ty Pennington and designers Ed Sanders, Leigh Anne Tuohy, Eduardo Xol and Xzibit stepped in with a huge assist from local builder Vision Homes and countless volunteers to build the family a new home.

This kid Patrick is a CHARACTER!! Completely engaging! You can’t help but adore him immediately! During his stay at Walt Disney World, Patrick shot a PSA (Public Service Announcement) on kids with disabilities pointing out what we already know – they’re just kids!! icon smile Extreme Makeover Home Edition and Osteogenesis Imperfecta Awesome and INSPIRING! He and his parents, Mike and Cindy were also taken by Leigh Anne Tuohy to meet Atticus Shaffer an actor (who happens to also have Ostaogenesis Imperfecta) and the rest of the cast of the ABC show – The Middle. He was thrilled and even tho I don’t watch the show so was I! Another kid getting to live his dream and it’s not featured on the show, and ABC comedy – he’s just a talented kid….he’s not being cast because he is “disabled”…..FANTASTIC! icon smile Extreme Makeover Home Edition and Osteogenesis Imperfecta

When the house was finished you couldn’t help but be completely overwhelmed with what they had accomplished for Patrick and his family! Amazingly they placed a therapy pool in the home, an amazing piece of the kitchen that was done at a height which would maximize Patrick’s ability to function independently! Xzibit then came in with a pimped out ride – Patrick’s new wheelchair – incredible! The bathroom was INSANE!! Completely ADA compliant, the bathroom was designed so that it was as safe as it could possibly be and maximized for Patrick’s independence! Patrick’s classroom was done in a incredible comic book themed extravaganza complete with a secret passage way between it and Patrick’s room.

Not to be outdone, Leigh Anne’s beautiful tribute master bedroom for the parents was as beautiful as Patrick’s area was functional. She completed the suite with an iPad programmed to give them the ability to watch over Patrick with video cameras that had been installed in locations throughout the house. This will give Mike and Cindy the ability to allow Patrick some autonomy while being able to make sure his safety is maintained.  What a gift for any parent! Ok, now I need a new box of tissues…If you missed it I strongly recommend you check it out at ABC.com

spdbutton #Follow Friday   Sensory Processing Disorder Blogger NetworkI found a really neat blog yesterday when looking around for new resources for my youngest, Donovan. Twitter actually led me to them. The SPD (Sensory Processing Disorder) Blogger Network (Twitter @spdbn) has networked a number of bloggers who write about all types of issues impacted by SPD. Whether it’s Autism, Bipolar Disorder, Non-verbal Learning Disorder, or Sensory Processing Disorder itself (please – list not complete – LOTS of diagnoses are impacted by SPD’s) they have a group of people who write some really great articles about just about anything you could imagine having to do with SPD.

The article I read yesterday was on how to work on Social Skills with kids who have SPD’s. Hartley Steiner, the author of  This is Gabriel Making Sense of School wrote this article which had some ideas which I thought, “oh I know that” until I read further and realized in most cases she had a different take on it and that take gave me a new perspective. Awesome. The whole website is really full of great information. And can you really resist Otto the Octopus – Seriously Cute – and meaningful icon smile #Follow Friday   Sensory Processing Disorder Blogger Network

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