It seems like time is flying!
Not so long ago we had just moved 3,000 miles away to get into SPICE Autism program in Syracuse, NY.
Dezi’s speech was getting clearer and the miracles of what ABA, an Autism Dream Team and intensive parent training can do was amazing.
We have so much to catch up on since then. After the amazing nurturing of great Early Intervention, though warned, nothing prepared us for the let down of public schools. Yes, even in the good places you have to stay on your toes.
If you’ve purchased your used copy of Wrightslaw and started learning everything you can, you will at least know what an I.E.P. is, what I.D.E.A Laws are and how important you are to the whole process. Never forget no matter who went to what college where and how much they appear to know, YOU are your child’s true expert. You’ll also understand why it was so devastating to hear Betsy DeVos stumble when Sen Al Franken asked her about I.D.E.A. Laws and she didn’t know what they were!
With Autism more frequent than all disabilities combined, it is scary that our Education Secretary knows nothing about Disabilities and Education Laws. Know your rights. Half.com is a great place to pick up a used copy. http://search.half.ebay.com/wrightslaw_W0QQ_trksidZp3030Q2em1446Q2el2686QQmZbooks
I have found the used copies have great highlighting in all the right places. You can also look Wrightslaw up online.
I had also thought Washington State had passed Autism reform. Their plan was endorsed at the same time as Oregon’s. I thought it was safe to come back especially after Hurricane Sandy slammed into The East Coast. I also needed another neck surgery. In 2013 they replaced my entire C2-C7.
Meanwhile, Washington Senate tricked the public. They pulled OUT at the last minute and never voted any Autism reforms in! People take for granted that the State you live in determines the services and outcome of your kid’s lives! In some states like New York, a high percentage of kid’s diagnosed with Autism go on to higher education. In places like Washington State, it’s less than 10% and most of those were home schooled.
I was sure they’d be happy and amazed to see this once severely Autistic student thriving and had even skipped 2 grades!
The Doctor’s at Mary Bridge Children’s Hospital, (where Dezi was diagnosed with Autism in 2008), were thrilled to tears to see Dezi’s progress. The local school on the other hand, was WORSE than before we left! Even fundamentals like basic Autism safety were unknown to them! They didn’t think a 1 on 1 was supposed to be with the student when he walked alone outdoors between classes and buildings. Dezi has a clotting factor issue as well as speech impairment. If he even fell or had a bloody nose, how could he ask for help or let someone know he needed to go to the Emergency Room? They have no idea how to educate kids with Autism. The 1 on 1 was completely without Autism Awareness and very lazy. The Ombudsman didn’t help. It never makes sense to complain to a school official about a school issue. Huge conflict of interest. Before withdrawing my son, I told them about the global website dedicated to safety AWAARE http://awaare.nationalautismassociation.org/
At least the kids following might have better safety. An open fence to busy traffic and a Dairy Queen across the street is a very bad idea for everyone who knows about ‘wandering’.
The man who is the Head of Special Education for Washington State was both open and enthused to hear of Dezi’s success and to learn about our training and experiences from New York. Sadly, he felt his hands were tied because some of the Special Ed Directors in the districts run rough shot over everyone. No one dares question them. I understood since I was bullied too. They should embrace the techniques used in States that have successes.
They refused to follow any of my son’s I.E.P. and stood against technology though I was providing all of it and they would not have to spend anything. At a meeting of the ‘team’ I asked specifically where people got their research and evidence based Autism information…cricket, cricket. The Special Education Director didn’t know about Autism testing even though it was introduced at a State meeting of all Special Education Directors she attended 3 years earlier. She was very proud to boast she was running for President though. She wasn’t aware of how technology is used or how critical A.B.A./a singular methodology is for student success. In fact, there was not a chosen methodology between any of the Special Needs employees here.
Autism. The medical diagnosis where “winging it” is still acceptable in some states. Practicing malpractice, ignorance and negligence is their status quo.
There are NO monetary tax benefits in helping Special Needs kids improve. The lower scores bring more tax monies for the schools which DON’T have to be spent directly on the child! Instead of having one district school with an Autism Dream Team using a singular methodology, every school takes whoever is in their zone. More Autism stimulus funds for each school while none of the Autism students get accommodating or appropriate services. Schools lose tax incentives if Special Needs students improve. Greed vs Disability Rights and Laws for Education.
Parents can say they’re happy with services here but without experiencing a State that does Autism correctly, there is no credibility. There are huge differences in services/funding/training both in schools and in communities.
Dezi attended Summer Camp in NY daily for 5 weeks. The school provided transportation. No cost to the parents. All professional services are given through schools 5 days a week. Here they offer little or nothing. Not services or finances. Nothing.
BUT I underestimated the silver lining! I was pushed into doing this myself.
Starting as a necessity but evolving into a highly technical, personalized education where there’s no confusion, “winging it”, improper testing, inconsistent therapy, lack of technology or misuse of funds. Dezi is being educated and thriving while never having to give up personal safety!
Ready for the great news? He’s been doing computer coding classes! Last Summer he graduated from classes he attended at a Community College. He just turned 10 in August!
This also meant that I have had to learn far more about tech than I ever thought I could. My generation had dial phones, cool pagers, John Denver on 8 tracks and my teens had to show me how to listen to voice mail and delete messages. I was tech challenged.
My son loves to also study Hurricanes, storm patterns, Wikipedia (his favorite site), Tech Rocket, Tynker, Hopscotch and of course, Khan Academy for Math (Algebra and Geometry), Science and he loves Social Studies and History. Brain Pop is worth the fees as are Tech Rocket and Tynker. Dezi also reads Kindle books daily and astounds me with’ little things’ like memorizing all the Presidents, in order, in less than 1 hour.
Just for fun he already took a GED and passed over half of it.
For fun he love Minecraft with servers, Pokemon hunting, Algodoo and he’s starting animation.
This was his Christmas present in 2015. His own desk and PC.
Dezi’s skill set now requires much better computers than what we have or than I can afford. He downloads programs that are inside other programs that need high performance Computers. He has his tutors online for live chat. Fortunately, recently we found a great tech here who has replaced Hard Drives with SSDs and life support on what we have now to keep things going. This gets expensive too.
In fact, I had to stop writing for a few years. I was afraid to put more stress on the desktop that Dezi needs for school. There’s nothing more frustrating than a crash causing all your school progress to be lost. Who wouldn’t have a melt down?!
The answer? A FUNDRAISER for new TECHNOLOGY!
This at last has brought me to our 1st fundraiser for ourselves. We have had others for other kids! I have kept us going by buying older or used pcs BUT Dezi’s education and future depends on him having the type of technology he needs to advance.
A high performance desktop PC known or ‘gaming’ can cost up to $2,000-$3,000 BUT we don’t need brand names. I have been looking through sites like Acer, Best Buy, HP, Amazon and Dell to find their Scratch and Dent or Open Box discounts which still carry a decent warranty. Anything would be a huge improvement to what he’s using now. The crashing, lagging, frustration, over-heating and not a fast enough system to download some of the programs he needs, means it’s time to invest in proper equipment. I have already upgraded the keys, Monitor, Mouse and Headsets. I cancelled cable TV to afford just high speed internet. I don’t have a cell phone. I continue to stay home 24/7 except for grocery shopping or Dezi appointments and outings and I spend only on necessities. I pay for most of his courses that I haven’t gotten scholarships for.
The bottom line is this:
Dezi needs a High Performance or Gaming Desktop/ Laptop so he can work at home and be able to take classes.
I can get both for around $1,200 total. So, that’s our goal!
Dezi has worked so hard to come this far. From no speech, no eye contact, not wanting to eat any foods, head banging, untouchable, screaming and sad- to this now loving, brilliant, fun, happy kid who at least tries new foods and new situations. He’s put in a lot of very hard work! I’m so proud.
Whether you’ve followed us for awhile or just finding us now, my website is dedicated to everyone raising an amazing Autism child. Tools, research, help, ideas and of course, many, many emails that I try to answer 1 by 1 whenever I can. Working from a Kindle Fire slowed me down but never stopped me.
Will you? Can you? Even if everyone gave just 1 dollar- I believe we could do it.
We will always keep everyone updated so you can be a part of Team Dezi too!
Thank you for reading and caring.
Blessings and thank you!